Rare Disease Week is right around the corner, and this is a key opportunity to show up for the Huntington’s disease community and amplify our collective voice.
Washington, DC & Virtual
Below are the major activities taking place throughout the week and how you can participate.
FDA & NIH Rare Disease Day Activities Virtual or In Person
These events provide critical opportunities to hear directly from FDA and NIH leadership and learn how the agencies are supporting rare disease research and innovation.
Monday, February 23 FDA Rare Disease Day. Register here.
EveryLife Foundation – Rare Disease Week on Capitol Hill
Wednesday, February 25 Legislation & Advocacy Training. Watch the live stream. Visit the EveryLife Foundation website on 2/25 to access the live stream here.
Thursday, February 26 Capitol Hill Visits with State Delegations. This is where advocacy turns into action. Hill visits allow us to share the lived experience of Huntington’s disease and reinforce the urgent need for policies that support the development of novel therapies, increase access to care, and reduce financial burdens for families.
Take Action
Register for events you are able to attend
Participate in training if you are joining Hill visits
Be prepared to share your HD story and advocacy priorities
Your participation matters. Showing up during Rare Disease Week helps ensure Huntington’s disease remains front and center with federal decision-makers.
Thank you for all you do to advocate for our community.
February 23–27, 2026
2nd Annual Portillo Children Memorial Pickleball Tournament
Thank you to everyone who came out for our 2nd Annual Portillo Children Memorial Pickleball Tournament last Saturday, November 8th! We had a fantastic turn out and everyone brought so much great energy.
We want to give a special thank you to our sponsors: Leslie Frias, Frances Saldana, Crean Foundation, Yorba Linda Women’s Club, Aspire Products, Sports Basement, Orange County Children’s Theater!
2nd Annual Portillo Children Memorial Pickleball Tournament
