RARE Advocates Advisory Committee
The RARE Advocates Advisory Committee is comprised of rare disease advocates committed to ensuring that everyone in the rare disease community has a voice and can make an impact on legislation and policy. The committee includes 18 community members and the RARE Foundation’s Vice President of Advocacy.
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The RARE Advocates Advisory Committee is a diverse group of rare disease patient advocacy community leaders who are committed to ensuring that everyone in the rare disease community has a voice and can make an impact on legislation and policy. The committee works to ensure that the advocacy needs of the rare disease community are being served by RARE Advocates including:
- provide guidance, feedback, and counsel on RARE Advocates activities and events
- recruit advocates to join us and our advocacy events
- participate in and provide advocacy trainings
- speak at events, webinars, and briefings on behalf of RARE Advocates
How is the Committee structured?
The Committee will consist of 10-18 members, appointed by RDLA, and the Vice President of Advocacy at the RARE Foundation. Members commit to a one-year term with the option of renewing for a second one-year term.
How can I join the RDLA Advisory Committee?
Every fall, the RARE Advocates Advisory Committee recruits new members to help the RARE Foundation amplify our impact across the entire community of patients and families navigating the rare disease journey. Reach out to our team for more information: advocacy@rareadvocates.org.
What are the eligibility criteria?
- Participate in bimonthly advisory committee meetings (6 per year)
- Attend Rare Disease Week, Rare Across America, and other meetings
- Participate in community meetings and events
- Engage advocates in the rare disease community in state and federal advocacy
- Disseminate information on issues of importance
To learn more please contact the Advocacy Team at advocacy@rareadvocates.org.
Meet the RARE Advocacy Team
Meet the people who empower the rare disease patient community to drive impactful, science-driven legislation and policy that advances the development of treatments, diagnostic opportunities, and access.
Being on the RDLA Advisory Committee has not only allowed me to share my personal journey, but also allowed me to be part of a collective effort to influence policy. Through this role, I have made a meaningful impact by helping to shape policy priorities.
Shonda Berry
RDLA Advisory Committee Member
