Member Details

Organization: Ramsay Hunt Syndrome Foundation

Organization: PMD Foundation

Organization: Abdominal Cancers Alliance, a program of Partners for Cancer Care and Prevention

Organization: PCDH19 Alliance

Organization: Moyamoya Foundation

Organization: MHE Learning System

Organization: The MYT1L Project Foundation, Inc.

Organization: VEXAS Global Foundation

Organization: Channeling Hope Foundation

Organization: Test Org Account 1

Organization: ReNU Syndrome United

Organization: Project Alive

Organization: Kcnt1 Epilepsy Foundation

Organization: KCNQ2 Cure Alliance

Organization: IGA Nephropathy Foundation

Organization: Chelsea’s Hope Lafora Children Research Fund

Organization: Gallbladder Cancer Foundation

Organization: CTX Alliance

Organization: NORD Membership

Organization: Raymond A. Wood Foundation

Organization: International Foundation for Gastrointestinal Disorders (IFFGD)

Organization: Laryngeal Cleft Network

Organization: TED Community Organization

Organization: Lichen Sclerosus Support Network

Organization: Bloom Syndrome Association

Organization: MVA Society

Organization: CureLGMD2i Foundation

Organization: Maternal Alloimmunization Foundation

Organization: ALD Alliance

Organization: PTEN UK and Ireland Patient Group

Organization: Recurrent Pregnancy Loss Association

Organization: Coffin-Lowry Syndrome Foundation

Organization: Marshall-Smith Syndrome Organization of the USA, Inc.

Organization: MpBC Global Alliance, Inc.

Organization: The LCC Foundation

Organization: Heterotaxy Connection

Organization: MED13L Foundation

Organization: CTNNB1 Connect and Cure

Organization: Angel Flight of New England

Organization: Skraban-Deardorff Syndrome Foundation

Organization: WARD’S Foundation

Organization: 3q29 Foundation

Organization: As Healthy As Possible

Organization: XLID98 Foundation

Organization: Thisbe and Noah Scott Foundation

Organization: Bili Project Foundation

Organization: Einstök börn Stuðningsfélag

Organization: DCM Foundation

Organization: Pediatric Retinal Research Foundation

Organization: International Neuroendocrine Cancer Alliance

Organization: Krabbeconnect

Organization: KAT6 Foundation

Organization: Legg Calve Perthes Foundation

Organization: Spina Bifida Association

Organization: ADCY5.org

Organization: Amniotic Fluid Embolism Foundation (AFE Foundation)

Organization: Amyloidosis Foundation

Organization: Defeat Multiple System Atrophy Alliance

Organization: Pheo Para Alliance

Organization: Danny’s Dose Alliance

Organization: TANGO2 Research Foundation

Organization: Neurofibromatosis Northeast

Organization: Fanconi Cancer Foundation

Organization: Jansen’s Foundation

Organization: United MSD Foundation

Organization: International FOXG1 Foundation

Organization: HCU Network America

Organization: The Atypical HUS Foundation

Organization: Advocacy & Awareness for Immune Disorders Association

Organization: All Things Kabuki

Organization: Cystic Fibrosis Foundation

Organization: Team Audrey

Organization: Sudden Unexplained Death in Childhood Foundation

Organization: Cure LBSL

Organization: Foundation for USP7 Related Diseases

Organization: Mila’s Miracle Foundation

Organization: Child Neurology Foundation

Organization: Lung Transplant Foundation

Organization: ADNP-Kids Research Foundation

Organization: ALS Association

Organization: HSAN1E Society

Organization: Illness Challenge Foundation

Organization: KIF1A.ORG

Organization: Hyper IgM Foundation

Organization: National Leiomyosarcoma Foundation

Organization: CureCMT4J

Organization: Li-Fraumeni Syndrome Association

Organization: Foundation for Angelman Syndrome Therapeutics (FAST)

Organization: PHACE Syndrome Community

Organization: Life Raft Group

Organization: CMTC-OVM

Organization: Pura Syndrome Foundation

Organization: MLD Foundation

Organization: Born A Hero, Research Foundation

Organization: Pituitary Network Association

Organization: Foundation For Sarcoidosis Research

Organization: Canadian Organization For Rare Disorders (CORD)

Organization: Parent To Parent

Organization: Taiwan Foundation for Rare Disorders

Organization: HCU Network Australia

Organization: Wilhelm Foundation

Organization: Canadian CMTC Foundation

Organization: Sanfilippo Children’s Foundation

Organization: Wilson Disease Association

Organization: Worldwide Syringomyelia & Chiari Task Force, Inc.

Organization: XLH Network, Inc

Organization: Canadian PBC Society

Organization: Genetic Alliance Australia

Organization: EURORDIS-Rare Diseases Europe

Organization: US Hereditary Angioedema Association

Organization: Vasculitis Foundation

Organization: Vestibular Disorders Association

Organization: VHL Alliance

Organization: Williams Syndrome Association

Organization: Facial Pain Association

Organization: Siegel Rare Neuroimmune Association

Organization: TSC Alliance

Organization: Turner Syndrome Society Of The United States

Organization: United Leukodystrophy Foundation

Organization: United Mitochondrial Disease Foundation

Organization: SSADH Association

Organization: Stevens Johnson Syndrome Foundation

Organization: TargetCancer Foundation

Organization: Tarlov Cyst Disease Foundation

Organization: TESS Research Foundation

Organization: Sitosterolemia Foundation

Organization: Snyder-Robinson Foundation

Organization: Hope in Focus

Organization: Soft Bones, Inc

Organization: Spastic Paraplegia Foundation

Organization: Spinal CSF Leak Foundation

Organization: The RYR-1 Foundation

Organization: Sarcoma Foundation of America

Organization: SBS Cure Project

Organization: National Scleroderma Foundation

Organization: Scleroderma Research Foundation

Organization: Shwachman-Diamond Syndrome Foundation

Organization: RASopathies Network

Organization: Recurrent Respiratory Papillomatosis Foundation (RRPF)

Organization: Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

Organization: Rett Syndrome Research Trust

Organization: Rothmund-Thomson Syndrome (RTS) Foundation

Organization: PRP Alliance, Inc

Organization: PSC Partners Seeking A Cure

Organization: Pulmonary Fibrosis Foundation (PFF)

Organization: Pulmonary Hypertension Association

Organization: Rare & Undiagnosed Network (RUN)

Organization: Rare Cancer Research Foundation (RCRF)

Organization: Phelan-McDermid Syndrome Foundation

Organization: PKD Foundation (Polycystic Kidney Disease)

Organization: Platelet Disorder Support Association

Organization: Prader-Willi Syndrome Association (USA)

Organization: PCD Foundation (Primary Ciliary Dyskinesia)

Organization: PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome)

Organization: Oley Foundation

Organization: OMSLife Foundation

Organization: Organic Acidemia Association

Organization: Osteogenesis Imperfecta Foundation

Organization: Parent Project Muscular Dystrophy

Organization: NET (Neuroendocrine Tumor) Research Foundation

Organization: Neurofibromatosis Network

Organization: Ngly1.org

Organization: NICER Foundation

Organization: NTM Info & Research, Inc.

Organization: Ocular Melanoma Foundation (OMF)

Organization: flok Health

Organization: National Spasmodic Dysphonia Association

Organization: National Tay-Sachs & Allied Diseases Association, Inc. (NTSAD)

Organization: National Urea Cycle Disorders Foundation

Organization: NBIA Disorders Association

Organization: NephCure

Organization: National Foundation for Ectodermal Dysplasias

Organization: National Health Council

Organization: National MPS Society

Organization: National Niemann-Pick Disease Foundation (NNPDF)

Organization: National Organization for Albinism and Hypopigmentation (NOAH)

Organization: National PKU Alliance

Organization: The Myositis Association

Organization: Myotonic Dystrophy Foundation

Organization: National Adrenal Diseases Foundation (NADF)

Organization: National Alopecia Areata Foundation

Organization: National Brain Tumor Society (NBTS)

Organization: National Eosinophilia-Myalgia Syndrome Network

Organization: Mucolipidosis IV (ML4) Foundation

Organization: Mission MSA

Organization: Myasthenia Gravis Foundation of America, Inc

Organization: Myelin Project – Merged with ALD Connect

Organization: Myelodysplastic Syndromes Foundation, Inc

Organization: Myocarditis Foundation

Organization: Moebius Syndrome Foundation

Organization: The Morgan Leary Vaughan Fund

Organization: Mowat-Wilson Syndrome Foundation

Organization: MPN Research Foundation

Organization: MSUD Family Support Group

Organization: MEBO Research

Organization: Melorheostosis Association

Organization: Mesothelioma Applied Research Foundation

Organization: MitoAction

Organization: Lowe Syndrome Association, Inc.

Organization: Lymphangiomatosis & Gorham’s Disease Alliance (LGDA)

Organization: The Marfan Foundation

Organization: Martin Mueller IV Achalasia Awareness Foundation, Inc. (MMIVAAF)

Organization: The Mast Cell Disease Society, Inc.

Organization: M-CM Network

Organization: Joshua Frase Foundation

Organization: Julia’s Wings Foundation

Organization: Kennedy’s Disease Association

Organization: K-T Support Group (Klippel Trenaunay)

Organization: LAL-D Aware

Organization: LAM Foundation

Organization: Lipoprotein a Foundation

Organization: International Pemphigus & Pemphigoid Foundation (IPPF)

Organization: International Rett Syndrome Foundation

Organization: International WAGR Syndrome Association (IWSA)

Organization: International Waldenstrom’s Macroglobulinemia Foundation

Organization: International Society for Mannosidosis & Related Diseases (ISMRD)

Organization: Jack McGovern Coats’ Disease Foundation

Organization: Immune Deficiency Foundation

Organization: Incontinentia Pigmenti International Foundation

Organization: Indian Organization For Rare Diseases

Organization: International FOP Association (IFOPA)

Organization: International Foundation for CDKL5 Research (IFCR)

Organization: International FPIES Association

Organization: Hereditary Leiomyomatosis & Renal Cell Cancer Family Alliance

Organization: Hereditary Neuropathy Foundation

Organization: Hermansky-Pudlak Syndrome Network, Inc. (HPS Network)

Organization: Histiocytosis Association, Inc.

Organization: Hope For Hypothalamic Hamartomas

Organization: Hydrocephalus Association

Organization: Genetic Alliance

Organization: Global Foundation for Peroxisomal Disorders

Organization: Glut1 Deficiency Foundation

Organization: Gut Check Foundation

Organization: Guthy-Jackson Charitable Foundation

Organization: Hemophilia Federation of America

Organization: FD/MAS Alliance

Organization: Foundation Fighting Blindness

Organization: Foundation For Prader-Willi Research (FPWR)

Organization: The FPIES Foundation

Organization: Galactosemia Foundation

Organization: GBS/CIDP Foundation International

Organization: ECD (Erdheim-Chester Disease) Global Alliance

Organization: Erythromelalgia Association

Organization: Family Caregiver Alliance

Organization: Fat Disorders Resource Society

Organization: Fibrolamellar Cancer Foundation (FCF)

Organization: Fibromuscular Dysplasia Society Of America (FMDSA)

Organization: Cutaneous Lymphoma Foundation

Organization: Cystinosis Research Network

Organization: Desmoid Tumor Research Foundation

Organization: Dravet Syndrome Foundation

Organization: Dup15q Alliance

Organization: Familial Dysautonomia Foundation, Inc.

Organization: Team Telomere

Organization: Cure SMA

Organization: cureCADASIL

Organization: CurePSP

Organization: Curing Retinal Blindness Foundation (CRBF)

Organization: Cushing’s Support & Research Foundation (CSRF)

Organization: CMTC Alliance

Organization: CCHS Network (Congenital Central Hypoventilation Syndrome)

Organization: Congenital Hyperinsulinism International (CHI)

Organization: Consortium of Multiple Sclerosis Centers (CMSC)

Organization: Cornelia de Lange Syndrome Foundation, Inc.

Organization: Cure HHT Foundation

Organization: Chromosome Disorder Outreach, Inc.

Organization: Scarring Alopecia Foundation (SAF)

Organization: CLOVES Syndrome Community

Organization: Cluster Headache Support Group, Inc

Organization: Clusterbusters

Organization: Children’s Craniofacial Association (CCA)

Organization: Children’s PKU Network

Organization: Children’s Tumor Foundation

Organization: Chloe’s Fight Rare Disease Foundation

Organization: Cholangiocarcinoma Foundation

Organization: Chromosome 18 Registry & Research Society

Organization: SYNGAP1 Foundation

Organization: Cure MLD / The Calliope Joy Foundation

Organization: Cardio-Facio-Cutaneous (CFC) International

Organization: Castleman Disease Collaborative Network

Organization: Charcot-Marie-Tooth Association (CMTA)

Organization: Charlotte & Gwenyth Gray Foundation to Cure Batten Disease at The Giving Back Fund

Organization: Children’s Cardiomyopathy Foundation

Organization: APS Type 1 Foundation

Organization: Autoinflammatory Alliance

Organization: Gorlin Syndrome Alliance

Organization: BDSRA Foundation

Organization: Benign Essential Blepharospasm Research Foundation, Inc

Organization: Bohring-Opitz Syndrome Foundation, Inc.

Organization: Association For Creatine Deficiencies (ACD)

Organization: Association for Frontotemporal Degeneration (AFTD)

Organization: Association for Glycogen Storage Disease (AGSD)

Organization: Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

Organization: Ataxia Telangiectasia Children’s Project, Inc

Organization: Autoimmune Hepatitis Association (AIHA)

Organization: American Partnership for Eosinophilic Disorders (APFED)

Organization: American Porphyria Foundation (APF)

Organization: Amyloidosis Support Groups

Organization: Alternating Hemiplegia Of Childhood Foundation (AHCF)

Organization: American Behcet’s Disease Association (ABDA)

Organization: American Brain Tumor Association

Organization: American Multiple Endocrine Neoplasia Support

Organization: Adrenal Insufficiency United

Organization: Apbd Research Foundation

Organization: Alagille Syndrome Alliance

Organization: Alpha-1 Foundation

Organization: Alport Syndrome Foundation

Organization: Team Titin, Inc.

Organization: A Cure in Sight

Organization: A Twist of Fate-ATS

Organization: Acid Maltase Deficiency Association

Organization: Acromegaly Community, Inc.

Organization: Raregivers Global

Organization: Akari Foundation

Organization: CureARS

Organization: Lennox-Gastaut Syndrome Foundation

Organization: KARES Foundation

Organization: Hunters cmt4b3 Research Foundation Inc

Organization: HPV Cancers Alliance

Organization: Cure Mucolipidosis

Organization: Next Generation of Cystinosis

Organization: 22q Alabama

Organization: Warm Autoimmune Hemolytic Anemia Warriors

Organization: Pyruvate Kinase Deficiency International Alliance

Organization: The Wiedemann-Steiner Syndrome Foundation

Organization: Diann Shaddox Foundation

Organization: Wake Up Narcolepsy, Inc.

Organization: The Healing Net Foundation

Organization: Hemophilia Foundation of Southern California

Organization: Plasminogen Deficiency Foundation

Organization: United Porphyrias Association

Organization: DLG4 SHINE Foundation

Organization: National Bone Marrow Transplant Link

Organization: IamHH

Organization: Chondrosarcoma Foundation, Inc.

Organization: Abetalipoproteinemia and Related Disorders Foundation

Organization: Stiff Person Syndrome Research Foundation

Organization: Hypertrophic Olivary Degeneration Association

Organization: Living With XXY

Organization: Association For Multiple Endocrine Neoplasia Disorders USA

Organization: PFIC Advocacy and Resource Network, Inc.

Organization: Amyloidosis Research Consortium, Inc. (ARC)

Organization: Narcolepsy Network

Organization: Sisters’ Hope Foundation

Organization: Wings of Hope

Organization: International FOXP1 Foundation

Organization: Pericarditis Alliance

Organization: Nr2F1 Foundation

Organization: International Prader-Willi Syndrome Organisation

Organization: Hypoparathyroidism Association

Organization: Global Liver Institute

Organization: FACES: The National Craniofacial Association

Organization: Progeria Research Foundation

Organization: Gould Syndrome Foundation

Organization: E.WE Foundation

Organization: Stichting Pierre Robin Europe

Organization: CACNA1A Foundation

Organization: Shwachman-Diamond Syndrome Alliance Inc

Organization: Intestinal Rehab & Transplant Unwrapped

Organization: Endosalpingiosis Foundation

Organization: NF2 BioSolutions

Organization: Kindness For Kimberlee

Organization: The Allo Hope Foundation

Organization: COMBINEDBrain – Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders

Organization: DYRK1A Syndrome US

Organization: Smith-Kingsmore Syndrome Foundation

Organization: National CMV (Cytomegalovirus) Foundation

Organization: Neuromuscular Disease Foundation (NDF)

Organization: Project Sleep

Organization: Jamal’s Helping Hands, Inc.

Organization: Xia-Gibbs Society

Organization: Koolen-De Vries Syndrome Foundation

Organization: Superior Mesenteric Artery Syndrome Research Awareness And Support

Organization: The EHE Foundation

Organization: Plan For Rare Foundation

Organization: Avery’s Hope

Organization: Rare Disorders Zimbabwe

Organization: Sam Day Foundation

Organization: DESSH Foundation

Organization: IndoUSRare

Organization: Superficial Siderosis Research Alliance, Inc.

Organization: Usher Syndrome Coalition

Organization: STXBP1 Foundation

Organization: National MALS Foundation (Median Arcuate Ligament Syndrome)

Organization: Global DARE Foundation

Organization: International Topical Steroid Awareness Network

Organization: Angelman Syndrome Foundation

Organization: Cute Syndrome Foundation

Organization: Gaucher Community Alliance (GCA)

Organization: The TBCK Foundation

Organization: Pulmonary Alveolar Proteinosis Foundation

Organization: International Autoimmune Encephalitis Society (IAES)

Organization: SkyHope

Organization: Foundation To Fight H-Abc

Organization: Parry Romberg Foundation, Inc.

Organization: Project Sunshine

Organization: Yellow Brick Road Project

Organization: Hypersomnia Foundation

Organization: Alliance to Cure Cavernous Malformation

Organization: Our Odyssey

Organization: KBG Foundation Inc

Organization: SATB2 Gene Foundation

Organization: Creutzfeldt-Jakob Disease Foundation

Organization: National Ataxia Foundation

Organization: Cystic Fibrosis Research Institute

Organization: Myhre Syndrome Foundation

Organization: CureGRIN Foundation

Organization: Helping Hands for GAND (HHFG)

Organization: Tyrosinemia Society, Inc.

Organization: Cure VCP Disease, Inc.

Organization: Liv4TheCure

Organization: Dreamsickle Kids Foundation

Organization: Smith-magenis Syndrome Research Foundation

Organization: Appendix Cancer / Pseudomyxoma Peritonei (ACPMP) Research Foundation

Organization: Aplastic Anemia & MDS International Foundation

Organization: Malan Syndrome Foundation

Organization: Myositis Support and Understanding Association

Organization: Hepatitis B Foundation

Organization: CMT Research Foundation

Organization: AXYS

Organization: FOXG1 Research Foundation

Organization: Sickle Cell Association of Texas Marc Thomas Foundation

Organization: Project 8p Foundation

Organization: Tatton Brown Rahman Syndrome Community

Organization: Perthes Kids Foundation

Organization: Cauda Equina Foundation

Organization: Bonnell Foundation: Living with Cystic Fibrosis

Organization: ASXL Rare Research Endowment (ARRE) Foundation

Organization: NEC Society

Organization: CRMO Foundation

Organization: DDX3X Foundation

Organization: Grin2B Foundation

Organization: MdDS Foundation (Mal de Débarquement Syndrome)

Organization: Achalasia Awareness Organization

Organization: Foundation For Ichthyosis & Related Skin Types

Organization: 17q12 Foundation

Organization: Coalition to Cure Calpain 3 (C3)

Organization: Sickle Cell Disease Association of America

Organization: SLC6A1 Connect

Organization: Snow Foundation

Organization: FamilieSCN2A Foundation

Organization: Rare Trait Hope Fund

Organization: Remember The Girls

Organization: Melanoma Research Foundation (MRF)

Organization: Muscular Dystrophy Association

Organization: CDH International

Organization: CHAMP1 Research Foundation

Organization: Choroideremia Research Foundation

Organization: Cureduchenne

Organization: Friedreich’s Ataxia Research Alliance (Fara)

Organization: Organization for Rare Diseases India

Organization: Uplifting Athletes

Organization: BCM Families Foundation

Organization: Rare Kids Network

Organization: SETBP1 Society

Organization: Csnk2A1 Foundation

Organization: DHPS Foundation

Organization: Ehlers-Danlos Society

Organization: PTEN Hamartoma Tumor Syndrome Foundation

Organization: iSEEK Pulmonary Hypertension Hope Center

Organization: Cure CMD

Organization: International Sacral Agenesis/Caudal Regression Association (iSACRA)

Organization: Sick Cells

Organization: Parents of Infants and Children with Kernicterus

Organization: National Bleeding Disorders Foundation

Organization: Sickle Cell Association of Houston, Inc.

Organization: Barth Syndrome Foundation

Organization: Autoimmune Encephalitis Alliance (AE Alliance)

Organization: Avalon Foundation

Organization: COPA Syndrome Foundation

Organization: Clear Cell Sarcoma Foundation

---

Contact Information