Rare Disease Week 2026 (January 1, 2026)
While my life has been turned upside down this last month, the need to advocate for medical research and better access to health care does not stop (and if anything, now has greater urgency). Rare Disease Week, organized by the EveryLife Foundation for Rare Diseases, will take place on Feb 25-26 in Washington, D.C. Last year, over 1,000 rare disease advocates from all 50 states showed up to share our stories and make legislative asks from our elected representatives.
Rare disease in the aggregate is not rare - 10% of Americans have a rare disease, about half of which are children. The issues that patients and families fighting rare disease face are not niche. We all benefit from accelerating the development of new therapies, newborn screening so that children can receive treatment earlier, and fewer hurdles to health care.
Registration for Rare Disease Week opens on Jan 7 (https://everylifefoundation.org/rare.../rare-disease-week/). The Pheo Para Alliance will be sending a team of rare disease advocates this year and is hosting an online information session on Wed Jan 7 at 4pm ET for anyone who is interested in learning more. Even if you don't have a connection with pheo para but want to advocate for your own rare disease issues, this is a great opportunity to ask questions and hear what it's like. I've found the experience to be incredibly inspiring and empowering and a great way to engage with our elected representatives and their staff. If you're interested in attending the information session, register via the link below. I'll be there as well!
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