Rare Disease Week on Capitol Hill
Rare Disease Week on Capitol Hill
NNPDF was honored to have 3 of our community members attend Rare Disease Week on Capitol Hill in Washington, DC last month. Garland Alvey, Kelly Lee, and Christine Petty attended the weeklong event.
Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, brings together hundreds of rare disease individuals, family members, caregivers, and advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provide opportunities to advocate for policy changes directly to their Members of Congress.
Thank you to Garland, Kelly, and Christine for sharing your voice and advocating on behalf of our entire Niemann-Pick Community. Read their summary reports below.
Rare Disease Week on Capitol Hill Summary Reports
Garland Alvey Summary Report
Kelly Lee Summary Report
Christine Petty Report
Why is Rare Disease Week important to the Niemann-Pick Disease community?
As part of the Niemann-Pick community, we are all advocates and our voices matter. Building awareness about rare diseases like Niemann-Pick disease is so important, and Capitol Hill week is a great opportunity for our voices to be heard.
Rare Disease Week is an opportunity for our community to increase awareness, learn about policy updates, and educate our policy makers about the challenges we face, and needs that we share, in living with Niemann-Pick disease.