Ahead of this year’s Rare Disease Week on Capitol Hill, which runs virtually July 14-22, the EveryLife Foundation will award grants to top advocates from rare disease organizations participating in the week’s pre-events.
The top 50 point winners will be eligible to earn $ 1,000 to $ 5,000 in grants, totaling up to $ 100,000, the foundation said in a statement.
The pre-event meet and greet session, to be held June 8-9, brings together regional and national rare disease advocates to interact in virtual games and award sessions. Registration is available through this link.
Participants can select a session based on their time zone. Each session is hosted by the EveryLife Foundation’s Rare Disease Legislation (RDLA) advocates, as well as its advisory committee and heads of state organizations.
Other pre-events include training webinars. More information is available through this link.
During Rare Disease Week on Capitol Hill, members of the rare disease community come together from across the country to educate and foster relationships within the community. Participants are educated on federal legislative issues, have the opportunity to meet other advocates and share their unique stories with lawmakers.
Registration for Rare Disease Week, open until June 18, is available here. This event, as well as the pre-events, is free to all rare disease advocates. Participants are required to select the events they wish to attend, and prior advocacy experience is not required.
Program highlights include a Congressional Caucus briefing on rare diseases, “Development of therapies against rare diseases: existing challenges and proposed innovative solutions, Scheduled for July 14 from 1 p.m. to 2 p.m. ET.
The goal is to unite rare disease policy experts and stakeholders to educate Congress staff, the public and advocates on issues of importance to the rare disease community.
It will be followed that day by a “Documentary screening on rare diseases,â€Set for 5:45 pm to 8:15 pm ET, and includes a panel discussion after the screening.
The next two days, July 15 and 16, will be devoted to training lawyers on the legislative process, as well as legislation currently under consideration by Congress and effective advocacy techniques to strengthen relationships with lawmakers.
Those “Legislative Conference Day 1“(July 15) and”Legislative Conference Day 2(July 16) are scheduled from 1 p.m. to 5 p.m. ET.
On July 15, the winners of the Rare Artists Competition 2020 will also present their works. This competition provides a national platform for people affected by rare diseases to showcase their creations and showcase their stories.
On July 16, the first RDLA Young Adult Representatives Leadership Academy (YARR) graduation meeting will introduce the next generation of young rare disease advocates.
The YARR Leadership Academy is for young adults, ages 18-29, who are engaged in the rare disease community and ready to take on a leadership role. During the course, they learn about the roles and opportunities for patient representation in policy making, therapy development, and the regulatory process that can lead to treatment approval.
On July 20 and 21, from 12 p.m. to 5 p.m. ET, virtual meetings with members of the United States House and Senate and their staff will take place, allowing advocates to apply what they learned during the legislative conference.
On its last day, July 22, a “Diversity Caucus Roundtable“The EveryLife Foundation will partner with the Congressional Black Caucus, Hispanic Caucus, Asian and Pacific Islander Caucus and LGBT Equality Caucus to discuss the perspectives and needs of underserved rare disease communities. Open to patient advocates, For industry leaders and community stakeholders, this session will run from 2 p.m. to 3:30 p.m. ET.
