Add Your Voice on Rare Disease Day
At the end of February, rare disease advocates from across the US and around the world work together to shine a light on the realities and needs of individuals living with a rare disease.
How To Get Involved
1) Contact your representative
United Porphyrias Association is working with our partners in the rare disease community to advocate for two important legislative decisions. Write to your member of Congress to ask for their support to:
Protect the Orphan Cures Act from Repeal (S. 2447): this law is essential for making treatments available and accessible to patients with rare diseases.
Support the Bipartisan Credit for Caring Act (S. 925 / H.R. 2036): This bill would provide family caregivers with a tax credit.
2) Participate in Rare Disease Day Events
February 27: Rare Disease Day at the NIH (in-person and online). This event features panel discussions, rare disease stories, in-person exhibitors and scientific posters, and an art exhibition. The event is free and open to the public. Agenda, registration and more information is available here.
February 27: Rare Disease Day at John Hopkins (in person, talks will be streamed online). UPA will be in-person for this exciting symposium focused on rare patient experiences, research updates, therapeutic development, multidisciplinary care, and more. Featuring an Advocacy Fair and Rare Art Exhibit. More information here
Find an event in your area.
The National Organization for Rare Disorders has a listing of Rare Disease Days events across the US.
3) #ShowYourStripes
Join the National Organization of Rare Disorders #ShowYourStripes campaign.
Share your story on social media, post a photo of your stripes and help raise rare disease awareness!
