2026 Global Patient Unmet Needs Assessment is open! @MPNResearch Foundation invites individuals living with a myeloproliferative neoplasm (MPN) to participate in the 2026 Global Patient Unmet Needs Assessment. Your insights help guide …
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National PKU Alliance (NPKUA) supports an annual grant program to fund the most critical projects working to improve the lives of individuals with PKU. The 2026-2027 NPKUA Grant Program is …
NORD member @United Mitochondrial Disease Foundation's Mitochondrial Medicine Conference 2026 -- June 17-20 in Orlando -- brings together families and global leaders, scientists, and clinicians for four days of cutting-edge …
Building strong relationships with lawmakers is one of the most effective ways to advance rare disease policy and ensure the needs of our community are heard. The time between legislative sessions can be …
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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 …
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In this session, our Community Engagement team will provide a comprehensive, high-level overview of NORD's volunteer programming and the strategic initiatives. This is designed to give you a clear understanding …
Pericarditis Alliance offers a once a month virtual support group for patients and their families to check in, connect and learn from each other. They invite speakers to talk …
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About the Conference More about the event here: https://nnpdf.org/conf/ Each year, the NNPDF community gathers for something truly special, a chance to reconnect, welcome new families, and share the journey …
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You’re invited to attend National PKU Alliance’s “Living Our Best PKU Life” Community Conference, taking place Thursday, July 16, through Sunday, July 19, 2026, in Lombard, Illinois, a suburb of …
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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 …
Continue reading "🌟 Raymond A. Wood Foundation Survivor Support Group – Monthly Virtual Meetings"
The TBCK Foundation is excited to host “Black Ties for Rare”, a family-friendly gala to honor and celebrate those affected by rare diseases. They warmly invite you to join on Sunday, July …
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The Hydrocephalus Association will host HA CONNECT, its 19th Annual National Conference on Hydrocephalus, in Indianapolis from July 23–25, 2026. Families, clinicians, researchers, and industry leaders will gather to connect, …
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