Advocacy is easier than you may think. Advocacy is simply public support for a particular cause. Your cause! Everyone has a story to tell. And you can use yours to raise awareness and advocate for our community.
When you talk to your medical providers, pharmacist, co-worker(s), family and friends about CRPS, you are using your advocacy skills. As an advocate, you can also be an important part of the legislative and policy making process. You can make your voice heard by writing or calling your Senators and Representatives. If you need help in finding your legislators go to the House.gov website and enter your zip code.
- View the sample letter or sample email
If you are interested, we suggest you check out the Rare Disease Legislative Advocate (RDLA) website. RDLA is a part of Everylife Foundation for Rare Diseases. They have a wealth of information on how to speak up for CRPS in the rare disease community. Included are advocacy tools and tip sheets, along with information on how to foster a relationship with your Member of Congress and Schedule a Meeting with your Legislator and Lobbying for Rare Disease nonprofit organizations.
You can make a difference!
- Equip, Enable and Empower for SELF ADVOCACY
- Develop, recommend, and promote state and federal legislation.
- Promote awareness, equal treatment, and fair coverage.
RSDSA Advocacy Committee Members:
Jeri Krassner, Nancy Shurtleff, James Doulgeris, and Advisor – Marni Cartelli
If you would like to contact us please email – Advocacy@rsds.insctest1.com