17q12 Foundation
The 17q12 Foundation raises awareness, provides up-to-date information, and facilitates resources to affected individuals and families through supporting research of...
3q29 Foundation
We work to create paths to treatment for chromosome 3q29 syndromes through funding research, community-building, and increasing access to information...
A Cure in Sight
A Cure in Sight (ACIS) helps provide services nationwide through building public awareness, educating OM patients and their caregivers, funding...
Abdominal Cancers Alliance, a program of Partners for Cancer Care and Prevention
We are committed to saving lives and improving quality of life by connecting those facing abdominal cancers to the information...
Abetalipoproteinemia and Related Disorders Foundation
Our Mission is to provide scientific data driven information and guidance in the diagnosis and management of abetalipoproteinemia and related...
Achalasia Awareness Organization
AAO is a grassroots movement created to raise awareness about Achalasia, a rare, incurable and progressive esophageal motility disease with...
Acid Maltase Deficiency Association
The Acid Maltase Deficiency Association was established in 1995 to assist in funding research and to promote public awareness of...
Acromegaly Community, Inc.
The Acromegaly Community is a voluntary, non-profit organization whose mission is to provide an emotional and communal support network for...
ADCY5.org
ADCY5.org is dedicated to those living with ADCY5-related dyskinesia, by supporting affected families, clinicians providing care, and researchers studying ADCY5.
Adrenal Insufficiency United
Adrenal Insufficiency United is committed to enhancing the lives and health of our friends and family affected by adrenal insufficiency....
Akari Foundation
Educate and empower the Hispanic community about rare diseases, help with resources, awareness, advocacy, and education, entirely in Spanish, specializing...
Alagille Syndrome Alliance
The Alagille Syndrome Alliance (ALGSA) is a non-profit advocacy and support organization for people affected by Alagille syndrome (ALGS), a...
All Things Kabuki
All Things Kabuki is a 501(c)3 non-profit patient advocacy organization based out of Wasilla, Alaska. ATK works hard to create...
Alliance to Cure Cavernous Malformation
The Alliance to Cure Cavernous Malformation is a non-profit, charitable organization created with the mission to drive a cure and...
Alpha-1 Foundation
The Alpha-1 Foundation (A1F) is a non-profit voluntary organization dedicated to providing the leadership and resources that will result in...
Alport Syndrome Foundation
Alport Syndrome Foundation (ASF) is a U.S.based non-profit organization led by and dedicated to patients and families affected by our...
Alternating Hemiplegia Of Childhood Foundation (AHCF)
The AHC Foundation (AHCF) is a dynamic organization of dedicated people that tirelessly work and advocate for their children to...
American Behcet's Disease Association (ABDA)
The American Behcet’s Disease Association (ABDA) is a national 501(c)(3) nonprofit dedicated to supporting individuals and families affected by Behçet’s...
American Partnership for Eosinophilic Disorders (APFED)
The American Partnership for Eosinophilic Disorders (APFED) is a 501c3 nonprofit organization founded in December 2001 by a group of...
American Porphyria Foundation (APF)
The American Porphyria Foundation (APF) has supported the Porphyria community since 1983. Our mission is to improve the health and...
Amyloidosis Research Consortium, Inc. (ARC)
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of...
Amyloidosis Support Groups
Amyloidosis Support Groups (ASG), a 501 C 3 non-profit, was formed for the primary purpose of starting and maintaining Amyloidosis...
Angel Flight of New England
Angel Flight of New England (Angel Flight NE) is a nonprofit organization that coordinated FREE air transportation for children and...
Angelman Syndrome Foundation
The Angelman Syndrome Foundation, Inc., (ASF) is a non-profit organization whose mission is to advance the awareness and treatment of...
Apbd Research Foundation
Founded in 2005, the APBD Research Foundation is the only US-based patient advocacy and research nonprofit organization dedicated to finding...
Aplastic Anemia & MDS International Foundation
The Aplastic Anemia & MDS International Foundation is the world's leading nonprofit health organization dedicated to supporting patients and families...
Appendix Cancer / Pseudomyxoma Peritonei (ACPMP) Research Foundation
The ACPMP Research Foundation is an IRS-designated 501(c)3 charitable organization. The Foundation was created in 2008 by a community of...
APS Type 1 Foundation
The APS Type 1 Foundation was started by a group of dedicated parents who were determined to ensure that their...
As Healthy As Possible
A nonprofit focused on POLR2A.
Association For Creatine Deficiencies (ACD)
The Association for Creatine Deficiencies (ACD) was established in 2012, by parents of children diagnosed with a Cerebral Creatine Deficiency...
Association for Frontotemporal Degeneration (AFTD)
AFTD’s mission is to improve the quality of life of people affected by FTD and drive research to a cure....
Association for Glycogen Storage Disease (AGSD)
The Association for Glycogen Storage Disease [AGSD] is a parent and patient oriented support group that is advised by a...
Association For Multiple Endocrine Neoplasia Disorders USA
AMEND USA was formed in 2010 in collaboration with and supported by AMEND in the UK. AMEND USA connects those...
Association of Gastrointestinal Motility Disorders, Inc. (AGMD)
The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) was incorporated in 1991 and is one of the oldest nonprofit organizations...
ASXL Rare Research Endowment (ARRE) Foundation
The ASXL Rare Research Endowment (ARRE) Foundation is a family-led organization supporting research to increase the understanding of the ASXL...
Autoimmune Encephalitis Alliance (AE Alliance)
The Autoimmune Encephalitis (AE) Alliance was launched by families affected by autoimmune encephalitis. Founded in 2012 the AE Alliance is...
Autoinflammatory Alliance
The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved...
Avalon Foundation
The Avalon Foundation, kc4k, provides emotional and educational support to families receiving care for Hypophosphatasia (HPP). Providing support and direction,...
Avery's Hope
Avery's Hope is named in honor and in celebration of the founders’ grandson, Avery Harris, who was born with Microvillus...
Barth Syndrome Foundation
The only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for...
BCM Families Foundation
BCM Families Foundation is a non-profit organization incorporated in May 2014 in USA, in the state of Delaware, by families...
BDSRA Foundation
The Batten Disease Support and Research Association (BDSRA Foundation) is a 501(c)(3) grant-making charity dedicated to providing support, funding research,...
Bloom Syndrome Association
The Bloom Syndrome Association (BSA) is a nonprofit organization whose mission is to connect, educate, and support the international Bloom...
Bonnell Foundation: Living with Cystic Fibrosis
Our mission is to give emotional and/or financial support to parents who have a loved one with cystic fibrosis. Our...
Born A Hero, Research Foundation
Born A Hero is a research foundation with a mission to accelerate innovation and research to improve the quality of...
CACNA1A Foundation
CACNA1A Foundation is a parent-led 501(c)(3) non-profit. We are dedicated to creating awareness and finding a cure for CACNA1A genetic...
Canadian Organization For Rare Disorders (CORD)
The Canadian Organization for Rare Disorder's (CORD) is a non-profit organization dedicated to the enhancement of lives of all persons...
Cardio-Facio-Cutaneous (CFC) International
CFC International was founded as a nonprofit patient support and advocacy group in 1999. Developed in the hearts of dedicated...
Castleman Disease Collaborative Network
The Castleman Disease Collaborative Network (CDCN) is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve...
CCHS Network (Congenital Central Hypoventilation Syndrome)
Established in 1989 by Mary Vanderlaan, the CCHS Family Network emerged in response to her own experience with a CCHS-afflicted...
CHAMP1 Research Foundation
The CHAMP1 Foundation is an organization created for parents of children with developmental delay, hypotonia, cerebral palsy, autism, and epilepsy...
Charcot-Marie-Tooth Association (CMTA)
Charcot-Marie-Tooth Association (CMTA) is a 501(c)(3) national voluntary health organization that functions as an educational resource for people with Charcot-Marie-Tooth...
Children's Craniofacial Association (CCA)
Children’s Craniofacial Association is a national, 501(c)3 nonprofit organization, headquartered in Dallas, Texas. Nationally and internationally, CCA addresses the medical,...
Children's Tumor Foundation
The Children’s Tumor Foundation is the drug discovery engine for NF. By bringing together patients, doctors, scientists, and pharma, we...
Cholangiocarcinoma Foundation
The Cholangiocarcinoma Foundation (CCF) is a global organization dedicated to finding a cure and improving the quality of life for...
Chondrosarcoma Foundation, Inc.
The Chondrosarcoma CS Foundation’s mission is to create awareness and educate the public about Chondrosarcoma; support and advocate for patients...
Choroideremia Research Foundation
The Choroideremia Research Foundation, Inc., is an 501(c)(3) is the largest organization in the world focused on the search for...
Chromosome 18 Registry & Research Society
The Chromosome 18 Registry & Research Society is an advocacy organization dedicated to maintaining a registry of individuals affected by...
Chromosome Disorder Outreach, Inc.
The Chromosome Disorder Outreach, Inc., is an international, non-profit organization founded in 1992 to provide support, and information to individuals...
CLOVES Syndrome Community
CLOVES Syndrome Community is a 501(c)(3), nonprofit organization whose mission is to support, educate, empower and improve the lives of...
CMT Research Foundation
The CMT Research Foundation is a patient-led, non-profit with one single mission: to raise funds to invest in science that...
CMTC-OVM
The CMTC-OVM is an organization based in the Netherlands that provides information and other services to those affected with, or...
Coalition to Cure Calpain 3 (C3)
Coalition to Cure Calpain 3 (C3) has a pinpoint focus: to drive research to treat and ultimately cure limb-girdle muscular...
Coffin-Lowry Syndrome Foundation
The mission of the Coffin-Lowry Syndrome Foundation (CLSF) is to provide information and support for families, caregivers, relatives, educators and...
COMBINEDBrain - Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders
The Consortium for Outcome Measures and Biomarkers for Neurological Disorders is a non-profit consortium led by patient advocacy foundations, working...
Congenital Hyperinsulinism International (CHI)
The Congenital Hyperinsulinism International (CHI) CHI is a leading nonprofit dedicated to improving the lives of children and adults living...
Consortium of Multiple Sclerosis Centers (CMSC)
The Consortium of Multiple Sclerosis Centers strives to be the preeminent organization of multiple sclerosis health care providers improving the...
Creutzfeldt-Jakob Disease Foundation
Creutzfeldt-Jakob Disease (CJD) is a rare, rapidly progressive neurodegenerative disease, one of several Prion Diseases caused by prion proteins that...
Csnk2A1 Foundation
CSNK2A1 Foundation is focused on finding a cure for Okur-Chung Neurodevelopmental Syndrome and ensuring affected individuals have the opportunities and...
CTNNB1 Connect and Cure
CTNNB1 Connect and Cure is a parent-led 501(c)(3) non-profit. We are dedicated to funding research to find treatments and a...
Cure CMD
Cure CMD was founded in 2008 by three parents whose children have Congenital Muscular Dystrophy. Through close collaboration with researchers,...
Cure HHT Foundation
Renamed Cure HHT in 2014, the HHT Foundation International was founded by a tenacious and passionate group of patient families...
Cure LBSL
Cure LBSL is a nonprofit dedicated to raising awareness and funds for research into LBSL, an ultra-rare genetic disorder that...
Cure Mucolipidosis
Cure Mucolipidosis (Cure ML) is an international patient-driven organisation dedicated to bringing hope, treatment, and ultimately a cure to individuals...
Cure SMA
Cure SMA leads the way to a world where everyone impacted by spinal muscular atrophy (SMA) is empowered to lead...
Cure VCP Disease, Inc.
Cure VCP Disease, Inc., is a patient advocacy organization dedicated to driving the development of a cure for valosin-containing protein...
cureCADASIL
The CADASIL Association, Inc. (DBA cureCADASIL) is a 501(c)(3) organization whose mission is to raise awareness of CADASIL, so that the...
CureGRIN Foundation
CureGRIN Foundation is dedicated to improving the lives of people around the world with GRI Disorders (GRIA, GRID, GRIK, and...
CureLGMD2i Foundation
The CureLGMD2i Foundation, a 501(c)3 non-profit organization, was founded in 2011 by the Brazzo family when their daughter was diagnosed...
CurePSP
CurePSP is the leading non-profit organization dedicated to the awareness, care and cure for 3 neurodegenerative diseases: progressive supranuclear palsy...
Cushing's Support & Research Foundation (CSRF)
The Cushing's Support and Research Foundation, Inc., (CSRF) is a 501c3 non-profit organization formed in 1995 and dedicated to providing...
Cutaneous Lymphoma Foundation
The Cutaneous Lymphoma Foundation is a non-profit, 501(c)(3), patient advocacy organization dedicated to supporting patients with cutaneous lymphomas by promoting...
Cute Syndrome Foundation
The Cute Syndrome Foundation raises awareness of SCN8A mutations, funds the dedicated and talented scientists researching SCN8A, and supports the...
Cystic Fibrosis Foundation
The Cystic Fibrosis Foundation (CFF) is a voluntary, non-profit organization. Its mission is to assure the development of the means...
Cystic Fibrosis Research Institute
Cystic Fibrosis Research Institute (CFRI) is a 501(c)(3) charitable organization founded in 1975. The mission of the Cystic Fibrosis Research...
Cystinosis Research Network
The Cystinosis Research Network (CRN) is a voluntary, non-profit organization dedicated to supporting and advocating research, providing family assistance and...
Danny's Dose Alliance
Danny's Dose is a 501C3 nonprofit dedicated to changing outdated emergency medical protocols for chronic illness & rare disease. Their...
DCM Foundation
Formed in 2017 by a DCM Patient and a noted Heart Failure Cardiologist and DCM Genetic Researcher, the DCM Foundation’s...
DDX3X Foundation
We are a rare disease organization formed to connect families, resources, and the medical community to advance research for a...
Defeat Multiple System Atrophy Alliance
Both Defeat MSA Alliance and MSA United Research Consortium are inclusive US based 501(c)(3) charities which aspire to balance efforts...
Desmoid Tumor Research Foundation
The Desmoid Tumor Research Foundation (DTRF) is a non-profit organization whose mission is to seek to advance the science related...
DESSH Foundation
The DESSH Foundation supports individuals and families around the world affected by DeSanto–Shinawi syndrome (DESSH) by advancing research responsibly, strengthening...
Diann Shaddox Foundation
MISSION To advance knowledge and recognition of Essential Tremor to the world and find new treatments and a cure.
Dup15q Alliance
Dup15q Alliance is a nonprofit 501(c)(3) corporation. The community that is now known as the Dup15q Alliance was originally founded...
DYRK1A Syndrome US
DYRK1A Syndrome US is non profit 501c3, tax exempt organization with a main purpose of improving the quality of life...
E.WE Foundation
The E.WE Foundation is a global advocacy network supporting families affected by Trisomy 18 and other rare diseases, as well...
ECD (Erdheim-Chester Disease) Global Alliance
The ECD Global Alliance is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. Towards this mission the...
Ehlers-Danlos Society
The Ehlers-Danlos Society is a global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders...
Einstök börn Stuðningsfélag
Einstök börn (Unique children) is a support group in Iceland for children with rare diseases. The group was established in...
Erythromelalgia Association
The Erythromelalgia Association (TEA) is an international, all volunteer, nonprofit organization that provides educational and networking services online and offline,...
EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organizations from 74 countries that work...
FACES: The National Craniofacial Association
The National Craniofacial Association serves children and adults throughout the United States with severe craniofacial differences resulting from birth defects, injuries, or...
Facial Pain Association
The Facial Pain Association (FPA), formerly known as the Trigeminal Neuralgia Association (TNA), is a registered non-profit, 501(c)(3) volunteer organization,...
Familial Dysautonomia Foundation, Inc.
The Familial Dysautonomia Foundation is a national, non-profit organization founded in 1951 by parents of children with familial dysautonomia, a...
FamilieSCN2A Foundation
"Families" is part of our name for a reason. Rare and devastating, SCN2A-related disorders affect the entire family. Our team...
Fanconi Cancer Foundation
Founded in 1989 by parents Lynn and David Frohnmayer, FCF’s contributions have been instrumental in understanding the disease and improving...
Fat Disorders Resource Society
The Fat Disorders Resource Society (FDRS) (formerly the Fat Disorders Research Society) was founded in 2009 by Sue Grimshaw, Susan...
FD/MAS Alliance
The FD/MAS Alliance, incorporated as The Fibrous Dysplasia Foundation, is dedicated to leading the fight against fibrous dysplasia and McCune-Albright...
Fibromuscular Dysplasia Society Of America (FMDSA)
The Fibromuscular Dysplasia Society of America (FMDSA) is a 501(c)(3), non-profit health organization dedicated to improving the lives of these...
flok Health
Our mission is to rally the inherited metabolic disorder community to continuously improve our care and accelerate scientific progress.
Foundation Fighting Blindness
The Foundation Fighting Blindness was established in 1971 by a passionate group of families driven to find treatments and cures...
Foundation for Angelman Syndrome Therapeutics (FAST)
FAST is the leading patient advocacy organization working to cure Angelman syndrome. As the largest non-governmental funder of Angelman syndrome...
Foundation For Ichthyosis & Related Skin Types
The Foundation for Ichthyosis & Related Skin Types (FIRST) is a voluntary organization dedicated to helping individuals and families affected...
Foundation For Sarcoidosis Research
The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving...
Foundation To Fight H-Abc
The mission of the Foundation to Fight H-abc is to help raise awareness and promote funding for research tied to...
FOXG1 Research Foundation
The FOXG1 Research Foundation (FRF) is the parent-led, global rare disease patient organization driving the research to find a cure...
Friedreich's Ataxia Research Alliance (Fara)
The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to the pursuit of scientific...
Galactosemia Foundation
Galactosemia Foundation is a non-profit, voluntary health organization dedicated to maximizing the potential for the development of individuals with galactosemia,...
Gaucher Community Alliance (GCA)
Gaucher Community Alliance (GCA) is a 501(c)(3) non-profit organization for the patient community by the patient community. Our mission is...
GBS/CIDP Foundation International
The GBS/CIDP Foundation International is a global nonprofit organization supporting individuals and their families affected by Guillain-Barre’ syndrome (GBS), chronic...
Global DARE Foundation
The Global DARE foundation is a global community of individuals, caregivers, healthcare professional. Global DARE Foundation's mission is to promote...
Global Foundation for Peroxisomal Disorders
The mission of the GFPD is to improve the lives of individuals with peroxisomal disorders by funding research, championing scientific...
Global Liver Institute
Global Liver Institute (GLI) is a nonprofit organization founded in the belief that liver health must take its place on...
Glut1 Deficiency Foundation
The GLUT1 Deficiency Foundation is a nonprofit patient advocacy organization dedicated to bringing help and hope to the GLUT1 Deficiency...
Gorlin Syndrome Alliance
The Gorlin Syndrome Alliance is a non-profit organization whose mission is to thoughtfully support, comprehensively educate, and aggressively seek the...
Grin2B Foundation
GRIN2B Foundation is a parent-run organization dedicated to furthering research on the GRIN2B gene and providing support and education to...
Gut Check Foundation
Gut Check is a 501(c)(3) nonprofit organization that promotes education and research into the prevention and treatment of Clostridium septicum...
Guthy-Jackson Charitable Foundation
The Guthy-Jackson Charitable Foundation is a voluntary, non-profit organization dedicated to funding basic scientific research to find answers that will...
HCU Network America
HCU Network America is a registered 501 (c) (3) non-profit organization dedicated to helping patients and their families affected by...
Helping Hands for GAND (HHFG)
Helping Hands for GAND is a 501(c)(3) nonprofit charity which exists to support individuals and families affected by GATAD2B-associated neurodevelopmental...
Hemophilia Federation of America
Hemophilia Federation of America (HFA) is a non-profit 501(c)3 organization incorporated in 1994 to address the evolving needs of the...
Hemophilia Foundation of Southern California
The Hemophilia Foundation of Southern California (HFSC) is a nonprofit organization dedicated to supporting individuals and families affected by bleeding...
Hermansky-Pudlak Syndrome Network, Inc. (HPS Network)
The Hermansky-Pudlak Syndrome (HPS) Network is an advocacy organization for individuals and families affected by Hermansky-Pudlak syndrome. HPS is an...
Heterotaxy Connection
At Heterotaxy Connection, our mission is to create a world where individuals and families affected by Heterotaxy syndrome find the...
Histiocytosis Association, Inc.
The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with...
Hope For Hypothalamic Hamartomas
Hope for Hypothalamic Hamartoma (Hope for HH) is a non-profit organization dedicated to providing information and support to hypothalamic hamartoma...
Hope in Focus
Hope in Focus is a 501(c)(3) nonprofit patient advocacy organization dedicated to transforming the lives of those affected by blindness...
HPV Cancers Alliance
To empower individuals with knowledge about the health and lifestyle impact of HPV infection and embolden them to take the...
HSAN1E Society
HSAN1E Society is a non-profit organization, started by members of the Lindgren and Condensa families to bring awareness to this...
Hunters cmt4b3 Research Foundation Inc
Hunter's CMT4B3 Research Foundation is a non-profit 501(c)(3) public charity dedicated to transforming the future for those affected by Charcot-Marie-Tooth...
Hydrocephalus Association
Founded in 1983 as a family support group, the Hydrocephalus Association has grown to become the largest patient advocacy group...
Hyper IgM Foundation
Hyper IgM Foundation, a non-profit organization, was founded in 2015 by dedicated parents, healthcare professionals and friends. Our mission is...
Hypersomnia Foundation
The mission of the Hypersomnia Foundation is to improve the lives of people with idiopathic hypersomnia and related disorders by...
Hypertrophic Olivary Degeneration Association
The Hypertrophic Olivary Degeneration Association (HODA) was established in 2021 to support patients and families affected by HOD. We are...
Hypoparathyroidism Association
Our Vision Is... A world without hypoPARAthyroidism. Our Mission Is... To improve the lives of people impacted by hypoPARAthyroidism through...
IamHH
Patient organisation for Kallmann syndrome / hypogonadotropic hypogonadism. Helping patients contact other patients. Organising patient on line and in person...
Illness Challenge Foundation
In the summer of 2014, the China-Dolls Center for Rare Disorders in alliance with Sina Weibo introduced the worldly renowned...
Immune Deficiency Foundation
The Immune Deficiency Foundation, founded in 1980, is committed to enhancing patients’ lives through ensuring everyone with PI understands their...
Indian Organization For Rare Diseases
Indian Organization For Rare Diseases (IORD), a not-for-profit umbrella organization represents interests of all stakeholders of Rare Diseases in India...
IndoUSRare
Our vision is to educate, empower, and advocate for patients with rare diseases in the US, India, and around the...
International Autoimmune Encephalitis Society (IAES)
The International Autoimmune Encephalitis Society (IAES) stands as the sole global organization dedicated exclusively to the needs of patients and...
International FOP Association (IFOPA)
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic...
International Foundation for CDKL5 Research (IFCR)
The International Foundation for CDKL5 Research began as a group of parents whose children had CDKL5 Deficiency Disorder. We came...
International Foundation for Gastrointestinal Disorders (IFFGD)
IFFGD, the International Foundation for Gastrointestinal Disorders, is a Public Charity designated under the U.S. IRS code 501(c)(3). We are...
International FOXP1 Foundation
The International FOXP1 Foundation (IFF) is a registered 501(c)(3) non-profit organization dedicated to empowering families and individuals with FOXP1 syndrome,...
International FPIES Association
The International FPIES Association (I-FPIES) is a 501(c)3 patient organization dedicated to improving the diagnosis, treatment and quality of life...
International Neuroendocrine Cancer Alliance
The International Neuroendocrine Cancer Alliance (INCA) is the global voice in support of patients with neuroendocrine tumors (NETs) and genetic...
International Pemphigus & Pemphigoid Foundation (IPPF)
The International Pemphigus & Pemphigoid Foundation is a non-profit organization with a mission to improve the quality of life for...
International Rett Syndrome Foundation
The International Rett Syndrome Foundation is a non-profit, voluntary organization dedicated to three missions: research, advocacy and family support. Rett...
International Sacral Agenesis/Caudal Regression Association (iSACRA)
iSACRA is a 501(c)(3) nonprofit based in the USA and is the world’s only international organization serving those living with...
International Society for Mannosidosis & Related Diseases (ISMRD)
The International Advocate For Glycoprotein Storage Diseases (ISMRD) is a 501(c)(3) organization based in the United States and a leading...
International Topical Steroid Awareness Network
The International Topical Steroid Awareness Network is a nonprofit charity formed to raise awareness about a condition called Topical Steroid...
International WAGR Syndrome Association (IWSA)
The International WAGR Syndrome Association is a not-for-profit 501 (c)(3) charitable organization comprised of an international network of families, health...
International Waldenstrom's Macroglobulinemia Foundation
International Waldenstrom's Macroglobulinemia Foundation is a patient-founded nonprofit organization dedicated to supporting everyone affected by Waldenstrom’s macroglobulinemia to improve patient...
Intestinal Rehab & Transplant Unwrapped
Intestinal Rehab & Transplant Unwrapped is a nonprofit organization with the mission to educate clinicians, patients, caregivers, and the general...
Jack McGovern Coats' Disease Foundation
The Jack McGovern Coats’ Disease Foundation raises awareness of and funds research for a cure for Coats’ Disease, a rare...
Jamal's Helping Hands, Inc.
On November 20, 2017, Jamal’s Helping Hands was incorporated with the vision of creating a nonprofit organization to enhance the...
Jansen's Foundation
The mission of the Jansen's Foundation is to bring awareness and support research in hopes of bringing about a cure...
K-T Support Group (Klippel Trenaunay)
The Klippel-Trenaunay Support Group is a voluntary, self-help organization dedicated to providing support for individuals and families affected with Klippel-Trenaunay...
KARES Foundation
The KARES Foundation is a family-led organization dedicated to improving the lives of individuals affected by KDM5C genetic variants through...
KAT6 Foundation
The KAT6 Foundation was founded in 2017 by a handful of parents of children identified with mutations on their KAT6A...
KBG Foundation Inc
The KBG Foundation is a 501(c)(3) nonprofit organization, dedicated to providing support, assisting in research programs and advocating to raise...
Kennedy's Disease Association
The Kennedy’s Disease Association (KDA), founded in 2000, is a nonprofit organization dedicated to supporting individuals and families affected by...
KIF1A.ORG
KIF1A.ORG is a patient-led foundation started by parents dedicated to finding a cure for children living with KIF1A Disorder, a rare...
Koolen-De Vries Syndrome Foundation
Koolen-De Vries Syndrome Foundation's mission is to educate, increase awareness and promote research for the support and enrichment of individuals...
Krabbeconnect
KrabbeConnect is dedicated to prioritizing patients and caregivers in both care and research. By engaging with the Krabbe disease research...
LAL-D Aware
LAL Solace is a non-profit, voluntary organization whose mission is to provide support for patients, families, and healthcare providers of...
LAM Foundation
The LAM Foundation is a non-profit organization dedicated to finding a cure for lymphangioleiomyomatosis (LAM). The LAM Foundation is a...
Laryngeal Cleft Network
Laryngeal Cleft Network unites the entire laryngeal cleft community in order to improve the lives of children born with this...
Lennox-Gastaut Syndrome Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation Is A Nonprofit Organization Dedicated To Improving The Lives Of Individuals Impacted By LGS Through...
Li-Fraumeni Syndrome Association
We are families, like you who have been devastated by the effects of Li-Fraumeni syndrome (LFS), a hereditary cancer predisposition...
Lichen Sclerosus Support Network
The Lichen Sclerosus Support Network (LSSN) is a global, patient-led nonprofit organization dedicated to transforming the lives of people affected...
Liv4TheCure
Liv4TheCure's mission is to help advanced science and technology for rare chromosomal deletion syndromes. The founders daughter has Wolf Hirschhorn...
Lymphangiomatosis & Gorham's Disease Alliance (LGDA)
The LGDA is dedicated to improving the quality of life of patients with complex lymphatic anomalies by providing patient support...
M-CM Network
The M-CM Network is a U.S. not-for-profit 501(c)(3) organization founded in 2010. We provide opportunities for education and awareness among...
Malan Syndrome Foundation
The mission of the Malan Syndrome Foundation is to improve the lives of individuals and families affected by Malan syndrome...
Marshall-Smith Syndrome Organization of the USA, Inc.
MSS-USA is a 501c3 nonprofit patient advocacy organization established in July 2023. We aim to provide support to individuals with...
Martin Mueller IV Achalasia Awareness Foundation, Inc. (MMIVAAF)
The Martin Mueller IV Achalasia Awareness Foundation strives to connect patients and families to support each other through the emotional...
Maternal Alloimmunization Foundation
The Maternal Alloimmunization Foundation supports families affected by maternal alloimmunization and HDFN by raising awareness, educating patients and providers, and...
MdDS Foundation (Mal de Débarquement Syndrome)
The Mal de Débarquement Syndrome Foundation (MdDS Foundation) is a non-profit, rare disorder organization founded in 2003. Its mission is...
MED13L Foundation
The **MED13L Foundation** is a nonprofit organization dedicated to uniting and supporting families, researchers, and clinicians in the mission to...
Melorheostosis Association
The Melorheostosis Association is a 501(c)(3) not-for-profit organization dedicated to finding the cause, treatments and cure for melorheostosis. Our focus...
MHE Learning System
The MHE Learning System (MHELS) is dedicated to improving the lives of people with MHE through collaboration and shared learning.
Mission MSA
Mission MSA the patient advocacy and research organization dedicated to multiple system atrophy. Focused on providing support for those living...
MitoAction
MitoAction is a nonprofit organization founded by patients, parents, and Boston hospital healthcare leaders who had a vision of improving...
MLD Foundation
MLD Foundation is a 501(c)(3) non-profit US tax-exempt organization. We were formed in May 2001 to serve families throughout the...
Moebius Syndrome Foundation
The Moebius Syndrome Foundation is a national, non-profit organization founded in 1994. Its mission is to provide information and support...
Mowat-Wilson Syndrome Foundation
Founded in 2013, our mission is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support,...
Moyamoya Foundation
Founded in 2018, the Moyamoya Foundation (aka MoyaMoya Foundation Co) is a disease focused 501(c)(3) charitable non-profit foundation. Our focus...
MpBC Global Alliance, Inc.
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MPN Research Foundation
The mission of MPN Research Foundation is to stimulate original research in pursuit of new treatments — and eventually a...
MSUD Family Support Group
The MSUD Family Support is a non-profit organization dedicated to providing opportunities for support to affected individuals and their families,...
Mucolipidosis IV (ML4) Foundation
The ML4 Foundation is a non-profit organization founded by families whose lives have been affected by ML4. The mission of...
Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is committed to transforming the lives of individuals living with muscular dystrophy, ALS and related neuromuscular...
MVA Society
The MVA Society is the first and only dedicated charity for Mosaic Variegated Aneuploidy (MVA) syndrome.
Myasthenia Gravis Foundation of America, Inc
The Myasthenia Gravis Foundation of America (MGFA) is the leading health-based non-profit solely committed to finding a cure and better...
Myhre Syndrome Foundation
Myhre Syndrome Foundation is a patient advocacy organization dedicated to providing hope and improving the lives of those impacted by...
Myocarditis Foundation
The Myocarditis Foundation is a voluntary, non-profit organization that is dedicated to providing information about myocarditis to medical professionals, patients...
Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease...
Narcolepsy Network
Narcolepsy Network is the 501(c)(3), member-led patient advocacy organization based in the United States educating and supporting people with Narcolepsy,...
National Adrenal Diseases Foundation (NADF)
The National Adrenal Diseases Foundation (NADF) is a non-profit organization dedicated to providing reliable information, education, and support to individuals...
National Ataxia Foundation
The National Ataxia Foundation (NAF) was founded in 1957 to search for a cause and cure for Ataxia. This continues...
National Bleeding Disorders Foundation
About the National Bleeding Disorders Foundation The National Bleeding Disorders Foundation (NBDF) is a leading nonprofit organization dedicated to finding...
National Bone Marrow Transplant Link
The mission of the National Bone Marrow Transplant Link is to help patients, caregivers, and families cope with the social...
National Brain Tumor Society (NBTS)
National Brain Tumor Society (NBTS) unrelentingly invests in, mobilizes, and unites the brain tumor community to discover a cure, deliver...
National CMV (Cytomegalovirus) Foundation
The National CMV Foundation (NCMVF) is a non-profit organization, dedicated to preventing pregnancy loss, childhood death, and disability due to congenital...
National Eosinophilia-Myalgia Syndrome Network
The National Eosinophilia-Myalgia Syndrome Network, Inc., is a non-profit (501 C-3) organization dedicated to helping EMS survivors and their families...
National Foundation for Ectodermal Dysplasias
The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in...
National Leiomyosarcoma Foundation
The National Leiomyosarcoma Foundation provides patient and family education to empower them with knowledge about Leiomyosarcoma and provides funding support...
National MALS Foundation (Median Arcuate Ligament Syndrome)
National Median Arcuate Ligament Syndrome Foundation, Inc. (National MALS Foundation) is a nonprofit organization dedicated to the mission of providing...
National MPS Society
The National MPS Society is a non-profit organization dedicated to acting as a support group for families affected by mucopolysaccharidoses...
National Niemann-Pick Disease Foundation (NNPDF)
The National Niemann-Pick Disease Foundation, Inc. (NNPDF) is a non-profit, patient advocacy and family support organization dedicated to supporting and...
National Organization for Albinism and Hypopigmentation (NOAH)
The National Organization for Albinism and Hypopigmentation (NOAH) is a national, voluntary, non-profit organization for people with albinism, their families,...
National PKU Alliance
The National PKU Alliance (NPKUA) is the only national organization dedicated solely to supporting individuals and families affected by phenylketonuria...
National Scleroderma Foundation
The National Scleroderma Foundation is a relentless force in finding a cure and improving the lives of people affected by...
National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)
National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff...
National Urea Cycle Disorders Foundation
The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle...
NBIA Disorders Association
The NBIA Disorders Association is a non-profit voluntary organization founded in 1996 and dedicated to families affected by neurodegeneration with...
NEC Society
The NEC Society is a 501(c)(3) nonprofit organization dedicated to building a world without necrotizing enterocolitis (NEC) through research, advocacy,...
NephCure
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the...
NET (Neuroendocrine Tumor) Research Foundation
The Neuroendocrine Tumor Research Foundation is the largest global funder of research to discover cures and more effective treatments for...
Neurofibromatosis Network
The Neurofibromatosis Network (formerly NF, Inc.) is a non-profit 501(c)(3) organization and was founded in 1988 by a group of...
Next Generation of Cystinosis
Next Generation of Cystinosis exists to provide support to those who have transitioned from being children and youth to adulthood....
NF2 BioSolutions
NF2 BioSolutions was founded by Dr. Nicole Henwood, the mother of a young son diagnosed with NF2, to accelerate this...
NORD Membership
Our mission Improving the health and well-being of people with rare diseases by driving advances in care, research, and policy....
Nr2F1 Foundation
The NR2F1 Foundation was co-founded in 2018 by parents passionate about advocating for and increasing knowledge about Bosch-Boonstra-Schaaf Optic Atrophy...
NTM Info & Research, Inc.
NTM Info & Research (NTMir) is a 501(c)(3) non-profit organization formed on behalf of patients with nontuberculous mycobacterial (NTM) disease...
Ocular Melanoma Foundation (OMF)
The Ocular Melanoma Foundation (OMF) was founded in 2003 by Grant Allen and Dr. Robert C. Allen, a renowned glaucoma...
OMSLife Foundation
The OMSLife Foundation’s goals are to raise awareness of the general public and the medical community, raise funds for OMS...
Organic Acidemia Association
The Organic Acidemia Association is a 501c3 non-profit organization made up of parents of children with organic acidemia metabolic disorders....
Osteogenesis Imperfecta Foundation
The Osteogenesis Imperfecta Foundation, Inc. (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with...
Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy fights every single battle necessary to end Duchenne. They demand optimal care standards and ensure every...
Parry Romberg Foundation, Inc.
The Parry Romberg Foundation is a 501(c)(3) nonprofit organization that seeks to support patients and their loved ones affected by...
Pediatric Retinal Research Foundation
The mission of the Pediatric Retinal Research Foundation (PRRF) is to support the community of families impacted by blinding pediatric...
Pericarditis Alliance
Founded in 2020 by a team of volunteers, the Pericarditis Alliance provides a much-needed advocacy and information forum for pericarditis...
PFIC Advocacy and Resource Network, Inc.
PFIC Advocacy and Resource Network was founded in 2018 by 3 mothers of PFIC patients. Our mission is to improve...
PHACE Syndrome Community
The PSC supports families with a PHACE Syndrome diagnosis, which is the uncommon association between large infantile hemangiomas, usually of...
Phelan-McDermid Syndrome Foundation
The Phelan-McDermid Syndrome Foundation (PMSF) is a 501(c)(3) nonprofit organization is comprised of a diverse network of directors, advisors, staff...
Pheo Para Alliance
Founded in 2007, the Pheo Para Alliance is the longest-standing internationally recognized leader in advocacy for, and awareness of, pheochromocytoma...
Pituitary Network Association
The Pituitary Network Association (PNA) is a support organization dedicated to promoting, supporting, and, where possible, funding research on pituitary...
PKD Foundation (Polycystic Kidney Disease)
The PKD Foundation is a not-for-profit organization dedicated to finding treatments and a cure for polycystic kidney disease (PKD). Their...
Plasminogen Deficiency Foundation
Non-profit organization dedicated to the care and treatment of patients with plasminogen deficiency
Platelet Disorder Support Association
The Platelet Disorder Support Association (PDSA) is dedicated to enhancing the lives of people with immune thrombocytopenia (ITP) and other...
PMD Foundation
The PMD Foundation serves those affected by PMD through education, research, service and advocacy. Our goal is to reach a...
Prader-Willi Syndrome Association (USA)
The Prader-Willi Syndrome Association (USA) (PWSA) is a non-profit, voluntary health organization. Founded in 1975, the association provides parents and...
PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)
PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome) is a 501(c)(3) organization, dedicated to providing information and support to families...
Progeria Research Foundation
Established in 1999, the mission of The Progeria Research Foundation (PRF) is to discover a cure and effective treatment for...
Project 8p Foundation
The Project 8p Foundation is a non-profit 501(c)(3) corporation that means business. Vision: Cure genetic brain disorders with novel technologies...
Project Sleep
Project Sleep is a 501(c)(3) non-profit organization raising awareness about sleep health and sleep conditions. Believing in the value of...
PTEN Hamartoma Tumor Syndrome Foundation
The PTEN Hamartoma Tumor Syndrome Foundation was founded to find treatments or therapies for PTEN Syndromes by funding research, providing...
PTEN UK and Ireland Patient Group
PTENUKI exists to improve the lives of people affected by PTEN genetic alterations across the UK and Ireland. We bring...
Pulmonary Alveolar Proteinosis Foundation
The PAP Foundation is a non-profit patient advocacy organization dedicated to finding a cure and to improving the lives of...
Pulmonary Fibrosis Foundation (PFF)
The Pulmonary Fibrosis Foundation (PFF) is a 501(c)(3) organization whose mission is to is to help find a cure for...
Pulmonary Hypertension Association
PHA is a 501(c)(3) nonprofit organization that relies on donations to fund its many programs, including a network of patient...
Pura Syndrome Foundation
The PURA Syndrome Foundation is a globally focused charitable organization, registered in the USA as a 501(c)(3) tax-exempt non-profit corporation....
Pyruvate Kinase Deficiency International Alliance
We are a nonprofit dedicated to educating the public, patients and families, and healthcare providers on the most up-to-date, scientific,...
Ramsay Hunt Syndrome Foundation
About Us The Ramsay Hunt Syndrome Foundation (RHSF) is a 501(c)(3) nonprofit organization. We founded the RHSF in 2024 to...
Rare & Undiagnosed Network (RUN)
RUN stands for the Rare & Undiagnosed Network. We're a group of advocates, patients, families, researchers, and healthcare providers who...
Raregivers Global
Raregivers™ is a global network that delivers emotional support to caregivers, patients and professionals in rare, chronic and complex disease...
RASopathies Network
RASopathiesNet is the product of RASopathies Network USA, a 501c3 Non-Profit, and the RASopathies Network UK. Their goal is to...
Raymond A. Wood Foundation
The Raymond A. Wood Foundation is dedicated to advocating for and supporting survivors of hypothalamic-pituitary brain tumors. Founded with a...
Recurrent Pregnancy Loss Association
Recurrent Pregnancy Loss Association (RPLA) is dedicated to eliminating recurrent pregnancy loss through the advancement of research into causes and...
Recurrent Respiratory Papillomatosis Foundation (RRPF)
What began 30 years ago continues to be our life’s mission: to make information and hope possible for the patients...
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) mission is to provide support, education, and hope to all affected by the pain...
Remember The Girls
Remember The Girls aims to break the stigma facing females impacted by X-linked conditions by providing them with tools to...
Rett Syndrome Research Trust
The Rett Syndrome Research Trust (RSRT) is the organization working to cure Rett syndrome. As the largest funder of Rett...
Rothmund-Thomson Syndrome (RTS) Foundation
The Rothmund-Thomson Syndrome Foundation is a 501(c)(3) nonprofit organization. It was incorporated in November, 2009 by the Kimmel Family after...
SATB2 Gene Foundation
The SATB2 Gene Foundation, Inc. was established to enrich the lives of individuals with SATB2-associated syndrome, including those diagnosed with...
Scarring Alopecia Foundation (SAF)
SAF is the only patient advocacy organization in the world exclusively devoted to serving patients with scarring alopecia. SAF is...
SETBP1 Society
SETBP1 Society was originated and fueled by parents with children with SETBP1 haploinsufficiency disorder and related disorders. Serving as a...
Shwachman-Diamond Syndrome Alliance Inc
The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS)...
Shwachman-Diamond Syndrome Foundation
The Shwachman-Diamond Syndrome Foundation (SDSF) is a non-profit, voluntary support organization that functions as an international support system for people...
Sickle Cell Disease Association of America
To advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise...
Siegel Rare Neuroimmune Association
The Siegel Rare Neuroimmune Association is a not-for-profit dedicated to the support of children, adolescents, and adults with rare neuroimmune...
Sisters' Hope Foundation
The mission of Sisters’ Hope Foundation is to support and empower families impacted by Adult Onset Leukoencephalopathy with Axonal Spheroids...
Skraban-Deardorff Syndrome Foundation
The Skraban-Deardorff Syndrome (SKDEAS) Foundation is dedicated to improving the lives of individuals and families affected by Skraban-Deardorff Syndrome, a...
SkyHope
Patient AirLift Services is a 501(c)(3) nonprofit that arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up...
SLC6A1 Connect
SLC6A1 Connect is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1. Our...
Smith-Kingsmore Syndrome Foundation
The Smith-Kingsmore Syndrome Foundation is a registered 501(c)(3) non-profit organization, created by parents of children diagnosed with Smith-Kingsmore Syndrome. It...
Smith-magenis Syndrome Research Foundation
Improving Lives Through Research. The Smith-Magenis Syndrome Research Foundation is dedicated to improving the lives of people with SMS. Since...
Snow Foundation
The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and the...
Snyder-Robinson Foundation
The Snyder-Robinson Foundation is a 501(c)(3) tax-exempt organization formed to advance medical and scientific research related to Snyder-Robinson Syndrome ("SRS"),...
Soft Bones, Inc
Soft Bones, Inc., The US Hypophosphatasia Foundation is a voluntary, non-profit organization whose mission is driven by patient and caregiver...
Spina Bifida Association
The Spina Bifida Association (SBA) is a non-profit association dedicated to building a better and brighter future for those impacted...
Spinal CSF Leak Foundation
The Spinal CSF Leak Foundation was established in 2014 as a 501(c)(3) nonprofit organization by individuals directly affected by spinal...
SSADH Association
The SSADH Association is a 501 (c)(3) organization that assists patients and families who are affected by succinic semialdehyde dehydrogenase...
Stevens Johnson Syndrome Foundation
The Stevens Johnson Syndrome (SJS) Foundation and Support Group is a national, non-profit support group organization providing emotional support to...
Stichting Pierre Robin Europe
We are a not-for-profit international organization that advocates on behalf of patients suffering from the rare disease, Pierre Robin Sequence...
Stiff Person Syndrome Research Foundation
Our mission is to raise awareness of Stiff Person Syndrome (SPS), to support research for better treatments and a cure...
STXBP1 Foundation
STXBP1 Foundation's Mission is to create awareness in the disorders associated with STXBP1 mutations, fund and drive research to accelerate...
Sudden Unexplained Death in Childhood Foundation
The Sudden Unexplained Death In Childhood (SUDC) Foundation (formerly The SUDC Program) is tasked with providing a centralized resource for...
Superficial Siderosis Research Alliance, Inc.
Our vision is a future where a diagnosis of Superficial Siderosis is no longer a life-altering condition.
Superior Mesenteric Artery Syndrome Research Awareness And Support
SMASRAS is dedicated to promoting healthcare opportunities for under-insured individuals and educating both the medical community and the public about SMAS to...
Taiwan Foundation for Rare Disorders
TFRD, established in 1999, has been an active force in advocating for rare disease patients in respect of medication, education,...
TANGO2 Research Foundation
Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder
TargetCancer Foundation
TargetCancer Foundation (TCF) works to advance the development of more effective and personalized treatments for people with rare cancers. We...
Tatton Brown Rahman Syndrome Community
The Tatton Brown Rahman Syndrome Community aims to support all families affected by TBRS and advance research toward interventions. Facebook:...
Team Telomere
The mission of Team Telomere is to empower individuals worldwide impacted by Telomere Biology Disorders with information and support services,...
Team Titin, Inc.
Team Titin, Inc. is a tax-exempt nonprofit dedicated to serving those living with, caring for, or researching titin (TTN) related...
TED Community Organization
TED Community Organization is a 501(c)(3) nonprofit dedicated to supporting individuals affected by thyroid eye disease (TED). Our mission is...
TESS Research Foundation
TESS Research Foundation was founded to improve the lives of those affected by SLC13A5 Epilepsy. To achieve our goals, TESS...
The Allo Hope Foundation
Our mission is to prevent any harm, stillbirth or infant death caused by Maternal Alloimmunization and Hemolytic Disease of the...
The EHE Foundation
The EHE Foundation is a non-profit organization dedicated to finding treatments and a cure for the rare cancer, Epithelioid Hemangioendothelioma...
The FPIES Foundation
The FPIES Foundation is an Incorporated 501(c)3 Non-profit foundation dedicated to overcoming the challenges of FPIES by offering tools for...
The Healing Net Foundation
The Healing NET Foundation began when a neuroendocrine cancer patient and the expert physician who treated her agreed that more...
The LCC Foundation
The mission of the LCC Foundation is to support families affected by Leukoencephalopathy with Brain Calcifications and Cysts (LCC) across...
The Marfan Foundation
The Marfan Foundation is a nonprofit organization that drives research, education, and support – and builds community – to improve...
The Mast Cell Disease Society, Inc.
The Mast Cell Disease Society, Inc. (TMS) is a nonprofit organization dedicated to providing multi-faceted support to patients, families, and...
The Myositis Association
The Myositis Association (TMA) is an international non-profit organization dedicated to helping people with inflammatory myopathies through a variety of...
The MYT1L Project Foundation, Inc.
The MYT1L Project is a parent-led, scientist-supported foundation established in 2025 to advance research into evidence-based interventions for MYT1L Neurodevelopmental...
The RYR-1 Foundation
The mission of The RYR-1 Foundation is to support research leading to effective treatments or a cure for RYR-1-Related Diseases...
The TBCK Foundation
The TBCK Foundation is a non-profit charity dedicated to serving families impacted by TBCK Syndrome through accelerating patient-led research, advocacy,...
The Wiedemann-Steiner Syndrome Foundation
The Wiedemann-Steiner Syndrome (WSS) Foundation was established on June 16, 2016 by a group of WSS parents. We are a...
TSC Alliance
The TSC Alliance improves quality of life for everyone affected by tuberous sclerosis complex (TSC) by catalyzing new treatments, driving...
Turner Syndrome Society Of The United States
Established in 1987, the Turner Syndrome Society of the United States is a national non-profit actively connecting people and experts...
Tyrosinemia Society, Inc.
Educate and inspire individuals to improve health outcomes and advocate for adults and children with Tyrosinemia and related disorders. The...
United Leukodystrophy Foundation
The United Leukodystrophy Foundation (ULF) is a voluntary, non-profit organization dedicated to helping children and adults with leukodystrophy and assisting...
United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation (UMDF) is a voluntary, non-profit organization dedicated to providing education and support to individuals diagnosed...
United MSD Foundation
Founded in 2016, the United MSD Foundation is a 501(c)(3) nonprofit organization serving an international community of Multiple Sulfatase Deficiency...
United Porphyrias Association
United Porphyrias Association (UPA), a 501(c)3 non-profit patient advocacy group, was founded in January 2022 by a team of patient...
Uplifting Athletes
The organization’s mission is to inspire the rare disease community through the power of sports and empower people to take action against...
US Hereditary Angioedema Association
The HAEA is an advocacy and research organization committed to actively engaging our community in a wide variety of grassroots...
Usher Syndrome Coalition
The Usher Syndrome Coalition is a non-profit organization dedicated to supporting Usher syndrome (USH) researchers and families. The Coalition believes...
Vasculitis Foundation
Building upon the collective strength of the vasculitis community, the Vasculitis Foundation supports, inspires and empowers individuals with vasculitis and...
Vestibular Disorders Association
The Vestibular Disorders Association (VeDA) is the go-to international resource for individuals affected by vestibular (inner ear and brain) balance...
VEXAS Global Foundation
The VEXAS Global Foundation is a patient-focused nonprofit committed to improving the lives of those affected by VEXAS syndrome—a recently...
VHL Alliance
We all have a VHL gene. One in 36,000 individuals will experience VHL gene mutation which leads to tumor growth...
Wake Up Narcolepsy, Inc.
Wake Up Narcolepsy (WUN) is a 501(c)(3) nonprofit organization dedicated to driving Narcolepsy awareness, education and research towards improved treatments...
WARD'S Foundation
There is no roadmap when a child is diagnosed with a rare disease. It’s a overwhelming and isolating experience for...
Warm Autoimmune Hemolytic Anemia Warriors
As the only patient–led support organization for wAIHA, the wAIHA Warriors connect a community that is frequently isolated by rarity...
Wilhelm Foundation
An estimated 350 million People Living with Undiagnosed Diseases (PLWUD) worldwide. Despite extraordinary advances in genome sequencing, AI, and precision...
Williams Syndrome Association
The Williams Syndrome Association (WSA) is a national, voluntary, non-profit organization dedicated to improving the lives of individuals with Williams...
Wilson Disease Association
The Wilson Disease Association (WDA) provides education, information, support and hope to people impacted by Wilson disease worldwide so they...
Xia-Gibbs Society
Xia-Gibbs Society seeks to provide support to and advocate for those with Xia-Gibbs Syndrome and their families and to foster...
XLH Network, Inc
The XLH Network, Inc., a 501(c)(3) nonprofit corporation, works to connect affected families, clinicians, and researchers around the world with...
XLID98 Foundation
The XLID98 Foundation has been working diligently to raise awareness and support medical research, with the goal of ensuring that...
Yellow Brick Road Project
The Yellow Brick Road Project, Inc. is a charitable foundation whose mission is to fund research to identify, understand, treat,...
Afton DeLucca
Afton DeLucca was diagnosed with X-linked Alport syndrome via biopsy at age 26, which was later confirmed by genetic testing....
Aimee Yrlas Simpson
With over 25 years of experience in the nonprofit sector, I have a proven track record of developing and executing...
Alejandra Watson
Founding member of the Pyruvate Kinase Deficiency Organization in development through NORD's RareLaunch program.
Alex Caron
Do you have questions about your NORD membership benefits? Need help getting the word out about an upcoming event or...
Alli Ward
As the Director of Membership at the National Organization for Rare Disorders, my focus is on empowering our community through...
Allie Crafton
Welcome to the NORD Membership Portal! My name is Allie, and I’ve had the pleasure of supporting the NORD Membership...
Alyssa Sutton
I’m the Program Specialist at the International Foundation for Gastrointestinal Disorders (IFFGD), based in the Raleigh, North Carolina area. With...
Angela Mcbride
Caregiver/Family Member
Bertram Kasiske
Bertram L Kasiske, MD, FACP, did his undergraduate training at Michigan State University, East Lansing, Michigan. He received his medical...
Ceciel Rooker
With almost two decades of experience in the field of gastrointestinal and motility disorders, Ceciel joined the International Foundation for...
Cheryl Richt
Parent of adult son with FOXP1 Syndrome - Advocate.
Christine Wassel
Chris joined the FIRST staff in 2010. Prior to FIRST, Chris worked in the pharmaceutical, insurance and non-profit sectors, in...
Cristol Barrett O'Loughlin
Cristol Barrett O’Loughlin is a seasoned executive and storyteller. As Founder & CEO of Raregivers, Inc. (formerly ANGEL AID), Cristol...
Dean Houle
I was first introduced to the rare disease community five years ago when my daughter Samantha (19 at the time)...
Eddie Day
Bereaved father to a child who passed from Peroxisomal Biogenesis Disorder Zellweger Spectrum Disorder.
Elaine Towle
Mom of James, age 39, living with Prader-Willi Syndrome Long time advocate and now working for Prader-Willi Syndrome Association|USA
Hayley McCorkle
Ms. McCorkle joined IFFGD in 2018 as the Operations Associate and was promoted to Public Relations Associate within one year....
Jake Saltonstall
Hello! My name is Jake Saltonstall and I am a patient and policy advocate. I enjoy mobilizing advocates, volunteers, and...
Jamie DuMont
I am located in the Charleston, S.C. area. I have been working in the non-profit sector for over 10 years....
Janet Thompson
Navy Veteran turned nonprofit professional and honored to lead the VHL Alliance, serving the 10,000 Americans who navigate von Hippel...
Jeffrey Kramer
Jeffrey T. Kramer, M.S.; President; created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. Shayna expressed a desire...
Julie Secombe
I am a researcher who studies the role of KDM5 family genes in neurodevelopmental disorders.
Kathy Pherson
I am carrying out the wishes of my husband, Randy, to support VEXAS patients, caregivers, and medical professionals. Randy and...
Kelly Brazzo
Kelly Brazzo is the co-founder and CEO of the CureLGMD2i Foundation, established in 2011, after her daughter, Samantha, was diagnosed...
Kerri Engebrecht
Kerri Engebrecht lives with her husband and younger son in Knoxville, TN and was introduced to the rare disease world...
Kristen Vargas
Kristen Vargas joined FSR in July 2025 as the Senior Coordinator for Global Patient Programs. She brings nearly three decades...
Lauren Beauregard
Lauren Beauregard's journey with CLOVES Syndrome Community began in 2015, sparked by her daughter's diagnosis. Drawing on her program management...
Martha Alyea
Hello! My name is Martha Alyea and I am the Community & Corporate Affairs Coordinator at NORD.
Melanie Lendnal
Melanie Lendnal is the Senior Vice President of Policy & Advocacy at the ALS Association, where she leads the organization’s...
Melissa McNeilly
Melissa is one of the founding members of KARES and a KDM5C mom who lives in North Carolina with her...
Ramaiah Muthyala
Education - Ph.D; Ph.D; MBA - Associate professor, University of Minnesota Expertise: 22 years in the pharma industry; 25 years...
Rigo Garcia
Rigo Garcia is the Executive Director of the Hemophilia Foundation of Southern California (HFSC), where he leads initiatives to improve...
Roberta Smith
Lead Created 02/04/2019 Lead Source: Summit AgendaRequest Lead ID: 00Q1G00000XWC1i Lead Description:
Robin Schultz
Robin Gross Schultz is a graduate of Hofstra Law School. After graduation, Robin served as a law clerk for Judge...
Rori-Suzanne Daniel
I am the Executive Director and a founding board member of the Superficial Siderosis Research Alliance (SSRA).
Sarah Cortell Vandersypen
Sarah Cortell Vandersypen joined the United MSD Foundation as its Executive Director in February 2023. Sarah brings more than a...
Sarita Edwards
Sarita Edwards is CEO & President of the E.WE Foundation, a global healthcare advocacy network. She began her efforts of...
Steve Grossman
20+ years of rare disease patient advocacy, rare disease drug discovery, precision health, digital health, marketing and sales for cell...
Terry Thompson
I was elected president of the KDA in 2021 and have been working ever since to expand awareness of Kennedy's...
Yiou Wang
Wang Yi’ou Founder, China-Dolls Center for Rare Disordersa & Illness Challenge Foundation Osteogenesis Imperfecta Advocate | Member of Jinan Municipal...
Yoyo Benchetrit
My name is Yochana (Yoyo) Benchetrit, and I am an incoming medical student at the University of Toronto’s Temerty Faculty...