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Register for Rare Across America
This summer, rare disease advocates across the country have the opportunity to meet with their federal legislators close to home in the state and district offices. You can make an impact on federal policy, share your rare disease story, and meet other rare disease advocates! Registration for Rare Across America is now open till July […]
Registration Now Open for Rare Disease Week on Capitol Hill 2020
You are invited to join more than 800 advocates for Rare Disease Week on Capitol Hill 2020 from February 25th to 28th. Registration is now OPEN for all the events during this exciting and powerful week in Washington, DC. Rare Disease Week on Capitol Hill brings rare disease community members from across the country together […]
Rare Disease Week on Capitol Hill 2020
Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 25-28, 2020, rare disease advocates will […]
2019 RareVoice Awards Finalists Announced
The Rare Disease Legislative Advocates (RDLA) today announced the 2019 RareVoice Awards patient advocate finalists. View the finalists. The RareVoice Awards is an annual celebration, now in its eighth year, to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government […]
Congratulations Advocates on Over 300 Rare Across America Meetings!
Thank you to the nearly 600 rare disease advocates who participated in meetings with their federal legislators during the August recess this summer! There were 303 meetings with Members of Congress or their staff in 49 states plus the District of Columbia. This is our highest turnout yet for our in-district meetings program, Rare Across […]
Travel Stipend Application Open for Rare Disease Week on Capitol Hill 2020
We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators. […]
RareVoice Awards Nominations Closing Soon
The RareVoice Awards nominations for 2019 are open! We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders, having passed or supported legislation for the rare disease community at the state and federal level. There is even a category for teenagers/young adults who have […]
Urge Legislators to Attend Rare Disease Caucus Briefing on September 11th
On September 11th, RDLA in coordination with the Rare Disease Congressional Caucus will host a briefing on “The Importance of the Newborn Screening Saves Lives Act”. This event will brief Members of Congress and staff on the importance of newborn screening programs and the impact of newborn screening on American’s lives. CLICK HERE to email or […]
Rare New England asks Massachusetts Advocates to Contact Legislators to Cosponsor H.1934 and SD.2264 to Create A Massachusetts Rare Disease Advisory Council
Rare New England is asking Massachusetts constituents to contact their state legislators and ask them to cosponsor “An Act To Create a Massachusetts Advisory Council”. Patients and families living with rare diseases face many challenges, including finding accessible medical care, affording available treatments, obtaining appropriate educational opportunities, and having basic needs met in everyday life. […]
