Rare Disease Week on Capitol Hill 2025

Rare Disease Week on Capitol Hill is happening February 24-26, 2025 in Washington D.C.

Hosted by the Rare Disease Legislative Advocates (RDLA), a program of EveryLife Foundation for Rare Diseases, this multi-day event empowers participants to learn key policies affecting the rare disease community and share their stories with Members of Congress.

Can't make it to D.C.? You can participate virtually! Here's the info:

Feb 24 - Rare Reels Documentaries (watch on your own time!)

Feb 25 - Legislative Conference Live Stream (9:00-5:00)

Feb 26 - Rare Disease Congressional Congress Briefing (9:00-10:00)

Link to participate: https://everylifefoundation.org/rare-advocates/rare-disease-week/rare-disease-week-attendee-corner-virtual-rare-disease-week

Ready to take action? View the RDLA Action Alert Center for ways to make your voice heard: https://everylifefoundation.quorum.us/actioncenter/

We are grateful to the EveryLife Foundation for their rare disease advocacy leadership!

You can read a previous CDKL5 in Color blog post about rare disease vs CDKL5 specific advocacy here: https://cdkl5incolor.blogspot.com/2025/02/be-change-becoming-advocate-for-cdkl5.html

Until next time 💚

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Disclaimer: CDKL5 in Color (podcast, website, blog, text and visual content, social media, and other creative works)

constitutes lived experience and is not intended as medical advice. Always consult your doctor.