You, yes, YOU!
Using your voice, sharing your rare disease story and joining others to amplify the message, brings the needs of the rare disease community to the attention of local, state, and federal government officials.
If you do not participate in advocacy, then your unique voice and rare disease story will not be heard.
Policymakers and legislators need to hear from advocates like you, patients, caregivers, health care providers, scientists, and other community members, on the challenges facing rare disease patients and caregivers from getting a diagnosis to accessing treatments and cures. Without your story, legislators can’t effectively support policies that help you, your family, or others with rare diseases.
As a rare disease patient, it's important to make our voices heard so we are considered in this climate of healthcare reform, especially considering our preexisting conditions may not be protected in future regimes.
Rebecca Strong
Rare Disease Advocate
Ways to Get Started
- Sign up to receive communications from RARE Advocates.
- Sign up for RARE Advocates events happening throughout the year.
- Participate in RARE Advocates Monthly Webinars.
- Schedule a meeting with your Member in their district office or on Capitol Hill.
- Invite your Member of Congress or their staff to events held in your community.
- Attend events like townhalls that your Member of Congress holds in the district and state.
- Participate in meetings about research and therapy development for your disease area at NIH or the FDA. Learn more, including how to apply for travel reimbursements through RARE Community Grants.
- Write letters or emails to your legislators.
- Write op-eds for your local newspapers.
