During our more than 30-year history, RSDSA has created relationships with many other groups and organizations with related interests that can provide special assistance to our members. We’ve also amassed an impressive library of articles, research studies and videos in a number of categories designed to help the many audiences interested in CRPS/RSD:
- Adult patients
- Youth with CRPS/RSD
- Families and Caregivers
- Medical Professionals
Following are links to websites and content that we hope you will find helpful. Please contact us if you are aware of other groups and information that you think we should post here.
CRPS and Pain Related Websites
A number of sites that promote awareness, education, and communication among the community. Contains chat rooms and online support groups.
The Coalition Against Pediatric Pain: TCAPP was founded by families of children who are effected by chronic neuropathic pain disease. All of the founding families children suffer from RSD/CRPS (Reflex Sympathetic Dystrophy/ Complex Regional Pain Syndrome) and many suffer from multiple pain conditions, such as EDS (Hypermobility Syndrome), muscle spasms, migraines, abdominal migraines, and painful GI issues.
Ferocious Fighters! Ferocious Fighters is an organization dreamed up by Patrick Boland, a young man with CRPS, a terrible neurological pain disease. This organization is dedicated to sending small bits of joy to kids fighting this terrible disease.
Thoracic Outlet Syndrome Society (TOSSociety.org)
contact Cyndy La Puma
a non-profit charity for RSI & TOS patients in chronic pain.
Communities and Blogs
For more online resources, click here.
CRPS/RSD Awareness UK on Facebook
The Mighty, The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges. We’re dedicated to helping people with CRPS and RSD in their lives. With this partnership, we’ll be able to help even more people. We encourage you to submit a story to The Mighty and make your voice heard.
Mothers Against Chronic Pain, is an organization of Moms, Dads, and concerned family members and friends that are looking for better ways to treat, cure, and take care of children who suffer from chronic pain conditions such as CRPS, EDS, and others.
Online Health Degrees If you’re interested in medicine, health, and wellness, you might want to consider earning a degree, especially now, as the healthcare industry continues to grow.
Title: NeuroTalk’s RSD and CRPS Forum: An Online Community with Valuable Resources
Source: RSDSA Review: 2012 Vol. 25, Issue 4
NeuroTalk Communities: RSD and CRPS
Scholarships and Financial Aid for Students with Disabilities: In 2011, 11% of all students enrolled in higher education reported having a disability, and this growing number indicates that more students with disabilities are enrolling than ever before. While this is cause for celebration, these students face additional financial challenges in achieving their educational goals. To address these needs, we have created this guide to financial aid for students with disabilities.
GoodCall: The Fully Accessible Guide to Paying for College for Students with Disabilities
Assurance Wireless: Find out if you qualify to receive a free Virgin Mobil Phone and 250 monthly minutes from Assurance Wireless.
CRPS Partners in Pain: A non-profit under the direction of Nancy Renee Cotterman
This resource directory for People With CRPS covers government assistance programs; free medicines for those who can’t afford them; clinical trials, food stamps, and other ideas for those who suffer financially from the effects of CRPS.
To order your free copy of the In Pain and Agonzing Over the Bills or any of our brochures, please call the RSDSA office at 877.662.7737 or send your name, mailing address, and brochure requested to RSDSA, 99 Cherry St., Milford, CT 06460.
The Lifeline Phone program provides free wireless phones and service to income-eligible consumers, in certain US States.
Online College Database – Directory of U.S. College
A complete guide to distance learning for students with disabilities. Learn how to work with disability services, employ assistive technology, evaluate online programs, and succeed in the virtual classroom.
Q Link Wireless is recognized as one of the nation’s leading providers of the Lifeline Assistance program. Our company’s mission is to wirelessly connect people to their world, regardless of their income.
Articles and Resources
Finding a Physician and Medical Treatment
American Academy of Neurology – Find a Neurologist
MR Neurography as a Useful Test in Evaluating People With CRPS
BY Robert L. Knobler, MD, PHD
World’s Softest® – Like Walking on a Cloud
Social Security, Workers Compensation, and Insurance
One strategy while applying for Social Security Disability benefits might be to request an evaluation by your state’s Department of Vocational Rehabilitation which might provide written documentation that you are unable to work outside the home and no home-based employment is available in your locale. If your case is closed, a letter (like the one here) can be included with an appeal.
The National Association of Injured and Disabled Workers (NAIDW) is a nonprofit charitable foundation where injured and disabled workers and their families find the resources, support, and guidance they need to reclaim their lives. NAIDW’s purpose is to provide short-term financial assistance to injured & disabled workers and their families as a result of injury, disability or illness.
The National Underinsured Resource Directory (from The Patient Advocate Foundation) is intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement.
How to Lose Your Case in 12 Easy Steps
By R. Steven Shisler, Esq.
Tactics for Social Security Disability
By Debra Sjolseth
Workers’ Compensation 101: An Overview of WC for Employees With Work-related CRPS
By R. Steven Shisler, Esq.
Support for People With CRPS
By Phyliss Shanken, MA