On Capitol Hill today with @everylifeorg.bsky.social advocating for more research funding for rare diseases, tax credits for caregivers, genomic testing for kids, and more. #RareDC2026 @markwarner.bsky.social @kaine.senate.gov @beyer.house.gov

DSF is on Capitol Hill for #RareDC2026 with 13 Dravet families—part of Rare Disease Week hosted by the EveryLife Foundation for Rare Diseases.

Reply with a 💜 to thank these families. #RareDiseaseWeek #PatientAdvocacy

We extend heartfelt congratulations to the EveryLife Foundation for Rare Diseases for a successful Rare Disease Week at Capitol Hill.

Your leadership in advocacy, policy engagement & amplifying patient voices strengthens the global rare disease movement.

#RareDC2026

13 families joined DSF in D.C. #RareDC2026 hosted by everylifeorg.bsky.social. With Shannon Cloud, Gloria Rodriguez, + Austin Watson, they met with offices across 12 states advocating for research, access, education, + support. Thanks to stoketherapeutics.bsky.social + UCB 🔗 tr.ee/HkUam6SPzp

Rare Disease Week on Capitol Hill is a great chance to advocate to US Members of Congress and their offices about the needs of #amyloidosis patients and families!

Learn more at: everylifefoundation.org/rare.../rare...

Interested? Email us at: support@arci.org. #RareDC2026

Ahead of #RareDiseaseDay Feb. 28, Sarita Edwards who founded E.WE Foundation after her son was diagnosed with Trisomy 18, reminds journalists that storytelling influences policy – and funding. #RareDC2026 https://nationalpress.org/topic/storytelling-impacts-disease-research-policy-and-perception/

Kate Racoff Musgrove, PhD, a LAM advocate, took over our Instagram during Rare Disease Week in DC. Read her full event recap here: https://www.thelamfoundation.org/recap-rdw-on-capitol-hill/

#LAMAdvocate #rarediseaseday #raredc2026 EveryLife Foundation for Rare Diseases

#RAREDC2026 is a Congressional lobbying program of the EveryLife Foundation for Rare Diseases being held Feb. 24-26, 2026
everylifefoundation.org/rare-advocat...

Catch Sophie this week on Capitol Hill!

As you may recall, Sophie Seaver has been named a 2025 Rare Artist Awardee by @everylifeorg.bsky.social, joining advocates and meeting with Members of Congress. Congrats, Sophie!

Give her music a listen: www.youtube.com/watch?v=AHyd...

#med13l #RareDC2026

2026 Rare Disease Week on Capitol Hill 🏦
#CureCHM #RareDiseaseCommunity #RareDC2026

Registration is now open for Rare Disease Week 2026 on Capitol Hill. This free multi-day event, hosted by the Rare Disease Legislative Advocates, brings together rare disease advocates from across the country to make their voices heard.

Register for #RareDC2026 zurl.co/rLFj5

As we prepare for #RareDiseaseDay (Feb 28), Muscular Dystrophy Pakistan proudly stands with the EveryLife Foundation for Rare Diseases—empowering advocates, advancing research & amplifying patient voices worldwide.

@rare_advocates #StrongerTogether #RareDC2026

At 18, a fall during cricket changed my life. Years later, I was diagnosed with LGMDR1, a rare form of Muscular Dystrophy. There’s no cure — but there is purpose.

In 2021, I founded Muscular Dystrophy Pakistan to ensure no patient walks alone.

Rare is not weak. 💪
#RareDC2026