We have compiled a list of online resources and forums that patients and caregivers can use to seek information and connect with each other.
There are other websites and forums available but some of the ones we typically use and recommend are listed below:
RSDSA
The RSDSA is probably the oldest and one of the best websites for all things related to CRPS. They continually update the site and now include a forum and a “hotline” that patients can call for compassionate help in finding resources and practitioners. They have an excellent library of journal articles in their research section as well as a blog for patients to post.
NIH
The National Institute of Health (NIH) is a scientific, clinical organization with billions of dollars in funding by the federal government for a wide variety of conditions. The two divisions of NIH with specific CRPS relevance are the current clinical trials website and the website for the National Institute of Neurological Disorders and Stroke. Search “CRPS” to find relevant information.
Pain News Network
Pain News Network is an independent, non-profit online news service that provides in-depth coverage of chronic pain conditions. Its mission is to raise awareness about chronic pain and to connect and educate pain sufferers, caregivers, healthcare providers and the public about the pain experience.
IASP Research Forum
The International Association for the Study of Pain has a free forum for patients, practitioners and caregivers seeking up-to-date, peer-reviewed journal articles about pain research.
Rare Disease Legislative Advocates
This is a section of the EveryLife Foundation for Rare Diseases and they promote advocacy tools and information on how to speak up to legislators about CRPS and other rare diseases.