Earlier this year, hundreds of advocates representing every state gathered in Washington, DC for the Rare Disease Week Legislative Conference. Their energy and enthusiasm raised the roof, as they shared experiences and prepared to visit their legislators on Capitol Hill. What a difference a pandemic makes. We replaced our daily routines with the mostly quieter […]
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More than 900 patients and families from across the country attended Rare Disease Week on Capitol Hill 2020 from February 25th – 28th, an annual event hosted by the Rare Disease Legislative Advocates (RDLA). The Week featured events designed to educate and activate advocates and to foster relationships within the community. Advocates representing 227 patient […]
(Washington, D.C., December 5, 2019) Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases (ELF), presented RareVoice Awards to individuals whose public policy advocacy leadership is saving lives and providing hope to millions of children and adults who live with rare diseases. RDLA is committed to growing the patient advocacy […]
Rebrand reflects program’s evolution and commitment to the patient voice The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, today announced the rebranding of its In-District Lobby Days program, which will now be called Rare Across America. The rebrand reflects the program’s evolution and reinforces the RDLA’s commitment to […]
1.) Learn about policy issues that impact you at the Legislative Conference. 2.) Share your unique story with members of Congress during Lobby Day, which is kicked off at our Lobby Day Breakfast.
Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that […]
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week’s events.
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
The EveryLife Foundation and CAL Rare are urging California advocates to have their state representatives join the Rare Disease California Caucus. The bipartisan Rare Disease California Caucus is led by Assemblymember and Health Committee Member Rob Bonta (D-Oakland) and Assemblymember and Health Committee Vice Chair Brian Maienschein (R-San Diego) to promote awareness of rare disease […]
From the EveryLife Foundation for Rare Diseases: Ask Your Representative to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients Take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 1223). The OPEN ACT could bring hundreds of safe, effective and affordable medicines to rare disease patients […]