Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill

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by Patricia Inacio PhD |

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Cedars-Sinai, $11.99M CIRM grant

Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the EveryLife Foundation will award grants to top advocates of rare disease organizations who participate in the week’s pre-events.

The top 50 point-earners will be eligible to win $1,000 to $5,000 in grants, totaling up to $100,000, the foundation announced in a release.

The pre-event Meet and Greet Session, to be held June 8 and 9, brings together regional and state-wide rare disease advocates to interact in virtual games and prize sessions. Registration is available through this link.

Participants can select one session according to their time zone. Each session is hosted by EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA), together with its advisory committee and state organization leaders.

Other pre-events include training webinars. More information is available using this link.

During Rare Disease Week on Capitol Hill, rare disease community members come together from across the country to educate and foster relationships within the community. Participants are informed about on federal legislative issues, have opportunities to meet other advocates, and get to share their unique stories with lawmakers.

Registration for the Rare Disease Week, open through June 18, is available here. This event, along with the pre-events, is free for all rare disease advocates. Participants are required to select which events they would like to attend, and prior experience in advocating is not necessary.

Program highlights include a Rare Disease Congressional Caucus briefing, “Rare Disease Therapy Development: Existing Challenges and Proposed Innovative Solutions,” scheduled for July 14 at 1–2 p.m. ET.

The goal is to unite policy experts and rare disease stakeholders in educating congressional staff, the public, and advocates on important issues to the rare disease community.

This will be followed that day by a “Rare Disease Documentary Screening,” set for 5:45–8:15 p.m. ET, and includes a panel discussion after the screening.

The following two days — July 15 and 16 — will be dedicated to educating advocates about the legislative process, as well as about legislation now under consideration by the Congress, and effective advocacy techniques to strengthen relations with lawmakers.

These “Legislative Conference Day 1” (July 15) and “Legislative Conference Day 2” (July 16) are scheduled for 1–5 p.m. ET.

On July 15, the winners of the 2020 Rare Artist Contest will also present their artwork. This contest offers a national platform for individuals affected by rare diseases to showcase their creations and highlight their stories.

On July 16, the first Young Adult Representatives of RDLA (YARR) leadership academy graduation meeting will present the next generation of young rare disease advocates.

The YARR leadership academy is directed to young adults, ages 18 to 29, who are committed to the rare disease community and ready for a leadership role. During the courses they learn about the roles and opportunities for patient representation in policy making, therapy development, and the regulatory process that can lead to a treatment being approved.

On July 20 and 21, from 12–5 p.m. ET, virtual meetings with members of the U.S. House and Senate, and their staff, will take place, allowing advocates to apply what they learned at the legislative conference.

For its final day, July 22, a “Diversity Caucus Roundtable” will have the EveryLife Foundation partnering with the Congressional Black Caucus, Hispanic Caucus, Asian and Pacific Islander Caucus, and the LGBT Equality Caucus to discuss the perspectives and needs of underserved rare disease communities. Open to patient advocates, industry leaders, and community stakeholders, this session will run from 2–3.30 pm ET.