Shannon von Felden

The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, is excited to announce that registration will open for Rare Across America on May 7, 2020. Rare Across America gives rare disease advocates an opportunity to build relationships with their legislators and educate them on legislation important to the rare disease community.

Under the Rare Across America program, RDLA staff schedules meetings for rare disease advocates with their members of Congress and/or the member’s staff. The meetings take place in the member’s district office during the month of August, when Congress is in recess. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars. No prior advocacy experience is necessary.

“Changing public policy is a year-round commitment. We must keep the momentum going,” says Julia Jenkins, the EveryLife Foundation for Rare Diseases Executive Director. “Rare Across America is a great way to connect patients and their care givers to members of Congress in their home districts, where they can build powerful relationships.”

Advocates interested in participating should register between May 4th and July 3rd at www. RareAcrossAmerica.org. If you have any questions about Rare Across America, please contact Shannon von Felden at svonfelden@everylifefoundation.org.

Shannon von Felden is the Program Director of the Rare Disease Legislative Advocates program at the EveryLife Foundation for Rare Diseases. Shannon is a policy and advocacy professional who works with rare disease advocates across the United States to further state and federal legislation.