If an election as close as this one can teach us anything, it is that your voice matters and can affect policy and politics. Outside of voting there are other ways to make your voice heard and one of those ways is Advocacy.

Advocacy is easier than you may think.  Advocacy is simply public support for a particular cause.  Your cause!  When you talk to your medical providers, pharmacist, co-worker, 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. 

To find your representative  click this link. All you have to do is enter your ZIP Code, and to download our pre-created template for reaching out click here!

Rare Disease Legislative Advocates (RDLA) is designed to support the advocacy of all rare disease patients and organizations. RDLA is committed to growing the patient advocacy community and working collectively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.

RDLA’s website is a wealth of information!  Included are advocacy tools and tip sheets, along with information on how to foster a relationship with your Member of Congress, Schedule a Meeting with your Legislator and Lobbying for Rare Disease non-profit organizations. One of the best tools they have is an Advocay Toolkit that you can download here.

Last year during Rare Disease Week on Capitol Hill, with the help of RDLA, 900 Rare Disease Advocates attended, 393 meetings with Members of Congress were held, involving 227 patient organizations.  In 2021, Rare Disease Week is July 19-22.  Please visit the RDLA website at www.rareadvocates.org for information on how you can be a part of this amazing week.  Together, we can make a difference.