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, pharmacists, 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 to your Congressmen and Congresswomen using our template (the parts in Yellow are where you can add your own personal story). Including your unique story helps it stand out when their offices receive it via email or mail.

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

Join the advocacy committee led by Lisa Van Allen by contacting us at [email protected].