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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 […]

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 […]

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 […]

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. […]