RARE on the Road Tour

The EveryLife Foundation and Global Genes are excited to partner for RARE on the Road, a Rare Disease Leadership Tour to bring critical education and insights to rare disease patients, caregivers and other advocates.

We are uniting to build and activate the rare disease community at the local level. Whether you’re new to the rare disease community or a “seasoned veteran” this workshop will benefit you!

Rare Action Network Workshops

The National Organization for Rare Disorders has many upcoming Advocacy workshops and Rare Disease Day events being planned across numerous states!


Impact Legislation on Capitol Hill

Rare Disease Legislative Advocates

The Rare Disease Legislative Advocates is part of the EveryLife Foundation for Rare Diseases and supports the advocacy of all rare disease patients and organizations.

By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.

Rare Disease Congressional Caucus

The Rare Disease Congressional Caucus are our allies on Capitol Hill! With over 100 members, the RDCC supports the rare disease community by incentivizing rare disease treatment innovations, regulating and standardizing innovative treatments, ensuring healthcare policy benefits the rare disease community, and minimizes barriers to treatment. Write your congressional representative and ask them to join the RDCC. Advocate for Perthes today!

Did you know…

Many of the advancements in rare disease treatment is made possible by the Rare Disease Act of 2002 which followed the Orphan Drug Act of 1983? These acts provided significant incentives to researchers pursuing treatment of diseases affecting less than 200,000 people. A particularly beneficial aspect to this legislation was the creation of the Office of Rare Diseases at the National Institutes of Health to promote collaboration and information sharing as well as patient education and advocacy. Currently the Orphan Drug Act is under review and at risk of being repealed.  Call or write your representative to save the Orphan Drug Act.


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