The 2025 NORD Rare Diseases & Orphan Products Breakthrough Summit will be held on October 19- 21 in Washington, D.C. This multi-stakeholder event offers an unparalleled opportunity to learn and network with rare disease leaders from academia, government, industry and patient advocacy groups. We will address the most current and critical topics for the more than […]
Health Insurance is changing …are you ready? All are welcome to join NORD on November 19 at 2:00pm EST for a Zoom webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the […]
As we approach the end of the year, the Membership Team is here to support you with your year-end wrap-up and 2026 planning. Instead of our usual webinar or affinity group meetings, we’re excited to offer dedicated office hour sessions in December. Topic: Renewal Support Date: Monday, December 8 Time: 2:00 – 3:00 pm ET […]
As we approach the end of the year, the Membership Team is here to support you with your year-end wrap-up and 2026 planning. Instead of our usual webinar or affinity group meetings, we’re excited to offer dedicated office hour sessions in December. Topic: Closing Out 2025 Date: Friday, December 12 Time: 2:00 – 3:00 pm […]
As we approach the end of the year, the Membership Team is here to support you with your year-end wrap-up and 2026 planning. Instead of our usual webinar or affinity group meetings, we’re excited to offer dedicated office hour sessions in December. Topic: Preparing for 2026 Date: Monday, December 15 Time: 2:00 – 3:00 pm […]
Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to […]
Every February 6, the Chondrosarcoma Foundation initiates Chondrosarcoma Awareness Day to bring awareness to Chondrosarcoma and honor the legacy of Shayna Elise Kramer who passed away from this rare cancer in November 2019. This February 6, 2026, will be her 35th heavenly birthday. It was Shayna’s wish to educate the public about Chondrosarcoma and support […]
The purpose of the RCC Medical Education Working Group is to develop and support initiatives that educate a broad range of audiences about rare cancers – including patients, caregivers, healthcare providers, and industry stakeholders. Members will work to improve understanding, communication, and informed decision making across all levels of the rare cancer journey. This meeting […]
RCC Policy Priorities Working Group Meeting: February 17, 2:00 PM EST The purpose of the RCC Policy Priorities Working Group is to monitor emerging federal and state policies that impact the rare cancer community. Members will work to equip advocates and policy-makers with the resources, data, and patient-informed recommendations they need to make informed, equitable, […]
Chondrosarcoma Tumor Board Meeting – February 17, 4:30 PM EST The Chondrosarcoma Tumor Board, is a specialized, multidisciplinary group of medical professionals who treat chondrosarcoma, hosted by the Chondrosarcoma Foundation, in collaboration with the Sarcoma Oncology Research Center in Santa Monica, CA. The tumor board will review cases submitted by physicians/oncologists globally and offer specialized […]
Survivor Support Group – Monthly Virtual Meetings Dates: Third Saturday of each monthTime: 3:00 PM ETLocation: Online via ZoomRegistration: Register here The Raymond A. Wood Foundation’s Survivor Support Group offers a monthly virtual gathering for adult survivors of hypothalamic-pituitary brain tumors. Moderated by brain tumor survivor Jason Burris, these sessions provide a safe space to […]
Rare Disease Day is a global initiative to raise awareness and generate support for everyone who is on a rare medical journey. It takes place on the last day of February, which this year is February 28th. The National Organization for Rare Disorders (NORD) is the trusted voice of the more than 30 million Americans […]