Advocacy is easier than you may think as it 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 speak with your medical providers, pharmacist, colleagues, 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.
- Take a moment to write them with our template. Be sure to add unique stories and touches to your letter so it will stand out when emailing or sending by USPS.
- If you need help finding your legislators, visit house.gov and enter your ZIP code.
If you are interested, we suggest checking out the Rare Disease Legislative Advocate (RDLA) website. RDLA is a part of EveryLife Foundation for Rare Diseases and 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, how to schedule a meeting with your legislator, and how to lobby 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, Megan Kilroy, Sheryl Freed, Marni Cartelli (Advisor)
- The Speeding Therapy Access Today (STAT) Act, H.R.1730/S. 670 was officially introduced this week by the Senators Amy Klobaucher, Roger Wicker and Congressmen Gus Bilirakis and G.K. Butterfield. This is bipartisan legislation that will accelerate therapies across the spectrum of rare diseases and disorders and facilitate patient access to such therapies. Please take the time to contact your member of Congress and ask your Senators and Representatives to co-sponsor this important legislation. You can make a difference. For more information about the STAT Act, click here.
- About Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) Syndrome
- National Economic Burden of Rare Disease Study Infographic – 02/2021