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RESOURCES | CRPS<br />
RESOURCES FOR CRPS<br />
Organizations<br />
<strong>Reflex</strong> <strong>Sympathetic</strong> <strong>Dystrophy</strong> Syndrome Association of America (RSDSA)<br />
RSDSA provides comprehensive information on education, treatment, and research for practitioners and lay people. Information is available as print<br />
pieces or on their website, www.rsds.org. RSDSA publishes a quarterly newsletter, a bi-monthly electronic newsletter and several brochures and<br />
booklets. One of its landmark publications, In Pain, Out of Work, Can’t Pay the Bills, is a resource directory for people who are financially devastated by<br />
CRPS. The organization’s web-housed article archive has more than 80 peer-reviewed articles on various aspects of CRPS.<br />
Address: 99 Cherry St. • Milford, CT 06460<br />
Telephone: 877-662-7737<br />
Email: info@rsds.org<br />
Website: www.rsds.org<br />
International Research Foundation for RSD/CRPS<br />
This is a nonprofit organization dedicated to education and research on <strong>Reflex</strong> <strong>Sympathetic</strong> <strong>Dystrophy</strong> and Complex Regional Pain Syndrome. The primary<br />
mission of the Foundation is to establish an international research network which will help educate medical professionals and support research worldwide.<br />
Address: USF Medical Clinics c/o Dr. A. Kirkpatrick<br />
12901 Bruce Downs Blvd., MDC59 • Tampa, FL 33612<br />
Telephone: 813-907-2312<br />
Email: info@rsdfoundation.org<br />
Website: www.rsdfoundation.org<br />
National Institute of Neurological Disorders and Stroke (NINDS)<br />
The mission of NINDS is to reduce the burden of neurological disease. NINDS has a listing of clinical trials for neuropathic pain. The information page<br />
that has been condensed from its former fact sheet. It also has a list of clinical trials recruiting people with CRPS.<br />
Address: NIH Neurological Institute<br />
P.O. Box 5801 • Bethesda, MD 20824<br />
Telephone: 800-352-9424 or (301) 496-5751<br />
Website: www.ninds.nih.gov/<br />
National Organization for Rare Disorders (NORD)<br />
NORD is a clearinghouse for information concerning disorders affecting fewer than 200,000 individuals worldwide and features valuable information<br />
on CRPS.<br />
Address: National Organization for Rare Disorders<br />
55 Kenosia Avenue • PO Box 1968 • Danbury, CT 06813-1968<br />
Telephone: 203-744-0100<br />
Tollfree: 800-999-6673 (voicemail only)<br />
Email: orphan@rarediseases.org<br />
Website: www.rarediseases.org<br />
For Grace<br />
For Grace is a nonprofit organization devoted to raising awareness of <strong>Reflex</strong> <strong>Sympathetic</strong> <strong>Dystrophy</strong> in the medical community and general public.<br />
Address: For Grace<br />
PO Box 1724 • Studio City, CA 91614<br />
Telephone: 818-760-7635<br />
Email: rsdaware@forgrace.org<br />
Website: www.forgrace.org<br />
American RSDHope<br />
This nonprofit group is made up of patients, parents and friends whose mission is to spread information to anyone and everyone who asks or will listen.<br />
Address: American RSDHope<br />
PO Box 875 • Harrison, ME 04040<br />
Email: rsdhope@mail.org<br />
Website: www.rsdhope.org<br />
Promoting Awareness of RSD and CRPS in Canada<br />
Website: www.rsdcanada.org/parc/english/index.html<br />
Books<br />
Living With RSDS, A guide to coping with <strong>Reflex</strong> <strong>Sympathetic</strong> <strong>Dystrophy</strong> Syndrome, by Linda Lang and Peter Moskovitz, MD. This book is available<br />
from the RSDSA home office for $15 or from Amazon.com.<br />
Positive Options for <strong>Reflex</strong> <strong>Sympathetic</strong> <strong>Dystrophy</strong> (RSD): Self Help and Treatment, by Elena Juris. This book is available from Amazon.com.<br />
Medifocus Guide—contains over 90 pages of information including a clear description of the condition, treatment options, the latest research and a<br />
worldwide directory of RSDS professionals. It is available from the RSDSA website, www.rsds.org.<br />
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