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The Organization
 
 
Founded

1984

   
Mission

RSDSA's mission is to provide support, education, and hope to everyone affected by CRPS/RSD while we drive research to develop better treatment and a cure.

 

Members of our Community

>9,168

   
Research

RSDSA is committed to encouraging research into developing better treatments, and investigating the cause and cure of CRPS. Since 1992, RSDSA has invested $2,100,222 in fellowships and grants. During 2009-2014, we have funded $739,567 in grants (as of Aug. 30, 2014).

This May, RSDSA hosted an International Scientific Conference in Chicago. The meeting was chaired by Drs. Gary Bennett and Norman Harden. The goal of the meeting was to bring together prominent thought leaders involved in Complex Regional Pain Syndrome (CRPS) research to share their ideas and current research, to identify research opportunities that hold the promise of finding the cause and cure of CRPS, and to create an International Research Consortium (IRC). One of the fundamental problems hindering CRPS research is that few labs have access to large numbers of potential clinical trial participants and few labs have the money to conduct large trials. As a consequence, the resulting studies are too small, generally only involve one site, and subsequently are not replicated by other labs. The goal of the IRC is to improve and quicken research that will benefit people with CRPS. As of October, 24 laboratories have expressed an interest in joining the IRC and significant collaboration between the researchers has begun. RSDSA will supply the administrative support for the IRC and serve as the "lead" institution when applying for National Institute of Health grants. It is one of the IRC's goals to favorably position it to be a recipient of a $5,000,000 "Rare Diseases Clinical Research Consortia for Rare Diseases Clinical Research Network grant" in 2018.

Presently we are funding five ongoing research projects:

  • our ongoing 20-year study of CRPS impact on the long-term health of people with CRPS,
  • a two-and-a-half year study in Europe and North America to define recovery and the priorities for recovery from the perspectives of patients with CRPS
  • an international study to develop a CRPS severity score.
  • funding of the administration of an international research consortium to provide a unified and convergent direction and approach to basic and clinical research in CRPS.
  • A pilot study to treat CRPS with low dose naltrexone at Stanford University

   
Publications
   

Educational Initiatives

 

 

   
Funding

Contributions, program fees, special events, and grant support from pharmaceutical and other companies, and private and corporate foundations.

   
Where Do Your
Contributions
Go?

Program Services: 69%
Administration and Fundraising: 31%

   
Goals
We have produced a DVD, "CRPS Therapies: Clinicians Share their Expertise that will instruct physical and occupational therapists how to restore function in people with CRPS. It will be accredited for continuing education credits. You can view the video on the RSDSA Home Page or visit YouTube and watch each segment of the video, What is CRPS, Restoring Function, Desensitization, Brain Retraining, Managing Flare-ups, and Brand Retaining.

Most importantly, we will continue on our mission to educate the community at large about CRPS through our publications, our website, and increased outreach efforts.

   
Board of Directors View the Board members
   
Scientific Advisory Committee

View the Committee members

   
Affiliations

RSDSA is proud to be affiliated with the following organizations:

National Pain Awareness Campaign

 

 

 

 

 

 

 

 

 

 

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