The Foundation provides travel stipends for Rare Disease Week on Capitol Hill as well as public meetings hosted by FDA and NIH in order to enable the rare disease community to participate. This year, we provided over $75,000 in travel stipends to 98 advocates from 49 states to enable them to participate in Rare Disease Week on Capitol Hill 2019.
The travel stipend application for Rare Disease Week on Capitol Hill 2020 will open in October 2019.
“I was able to attend a workshop on the Expanded Access Navigator at the FDA. As a patient/parent advocate, the face time with the FDA officials, pharmaceutical representatives, and other patient community stakeholders was effective, powerful and transformative.”
“My time at Rare Disease Week on Capitol Hill truly helped me learn to connect, inspire, and empower. Engaging young people in a political system that so often overlooks them is incredibly important and something that I would never have had the opportunity to do without the help of the EveryLife Foundation.”
“I became one of the first Moyamoya Disease patients to join Rare Disease Week on Capitol Hill and share my personal story with legislators. I learned so much about the rare disease world and how my small voice could make such a difference. Since I underwent bilateral brain bypass surgeries just a few months before, I wasn’t in a financial position to attend without the travel stipend.”