Advocacy Tools
We want to ensure that your voice is heard in local, state, and federal elections around the country.
It can be overwhelming to navigate healthcare as a young adult with a rare disease. Our RARE Young Adults Healthcare Guide can help you find supportive, responsive, and inclusive healthcare.
While we are working to shape policy priorities and resources for those at the intersection of LGBTQIA+ identity and rare disease identity, we are sharing with you two scorecards. The first measures congressional support for equality and the second of which measures congressional support for rare diseases.
Scorecards
The Human Rights Campaign (HRC) developed a congressional scorecard to measure support for equality in Congress.
RARE Advocates provides Legislative Scorecards for advocates to use when communicating and meeting with Members of Congress. The Legislative Scorecard “scores” legislators on policy actions that they took for the rare disease community.
Other Resources
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RARE Diversity
We are committed to empowering ALL rare disease patients through advocacy and to create pathways for underserved communities to engage in policy change, clinical trials, and the drug development process.
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About the RARE Pride Program
LGBTQIA+ individuals with rare diseases face distinct challenges, compounded by social stigma and inequity, which can impact their access to diagnosis, healthcare, and innovative medicines.
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RARE Pride Survey Summary
Check out the Pride in Rare Survey Summary that gauged experiences, resource needs, and opportunities to better serve the LGBTQIA+ rare disease community.
