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) – A non-profit charity for RSI & TOS patients in chronic pain
Contact Cyndy La Puma
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.
Six FAQs about Social Security Disability Insurance: SSD is an insurance program for workers who have paid Social security taxes, but are now prevented from working due to a serious health issue.
Title: NeuroTalk’s RSD and CRPS Forum: An Online Community with Valuable Resources
Source: RSDSA Review: 2012 Vol. 25, Issue 4
Ablerise is a website designed to “help locate disability resources and make the world a bit more caring.” It is a site a site designed to empower the people with disabilities disabled as well as their friends & family with resources, with the ultimate goal of fostering community mechanisms for seamless acceptance and assistance for those coping with any measure of disability.
Some Other Helpful websites:
Your Comprehensive Guide to Understanding Your Disability Insurance Policy
Medicare Coverage for People Under 65 with Disabilities
The Guide to Homebuying for the Disabled
Getting Help to Pay for Home Repairs or Modifications
How to Pay for Home and Durable Medical Equipment: A Comprehensive Guide
Paying for a Disabled Dependent’s Funeral: 3 Supportive Resources
Tax Tips for Caring for a Disabled Spouse
How to Legitimately Work from Home with a Disability
College Guide for Students with Disabilities: College students with disabilities have rights that allow for specific accommodations to help them succeed in school. Learn about legal protections, scholarships, technologies, and other assistance available to students with disabilities.
EduBirdie: Scholarships for Students With Disabilities
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.
Zivadream $1,500 Scholarship: Not only is the Zivadream team focused on providing high-quality education and test prep-related editorial content, but we’re also committed to giving students with disabilities a better chance to achieve their professional goals. Our annual scholarship program allows us to level the financial playing field so that students with disabilities can earn the degree of their dreams. We want this group of students to be able to focus on academics rather than external financial circumstances.
Scooters N Chairs: $1000 Bi-Annual Scholarship for STudents with Mobility Issues
SpinLife.com Innovation in Motion Scholarship Program: Is a program designed to aid college students in their academic endeavors.
Creditcard.com: This guide provides travel tips and airport considerations for each type of disability, as well as information on your rights and accommodations as a disabled traveler.
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.
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
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
World’s Softest® – Like Walking on a Cloud
Vohra, a group of wound care experts has created an App that provides education and tools to help heal wounds. It allows users to learn about wounds, predict healing time, suggest optimal treatments and improve outcomes. To get your App, please select: Vohra Mobile Wound App – Google Play, Vohra Mobile Wound App – Apple Store
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.
- The Complete Guide to Social Security Disability Benefits
- Dear Jeanne: Social Security Medical Examination
- Don’t Get Stuck in the Disability Backlot
- New Ticket to Work Regulations Create Exciting New Opportunities
- The Social Security Ruling on CRPS and what it means for you
- Frequently Asked Questions to start 2019, Chronic Pain & SSDI, Social Security continuing aggressive reviews, and What if my doctor doesn’t agree that I am Totally Disabled?
- By Jeffrey A. Rabin, Esq. 888.LAW.0600, Jeff@RabbinSSlaw.com
- How to Lose Your Case in 12 Easy Steps: By R. Steven Shisler, Esq.
- Tactics for Social Security Disability: By Debra Sjolseth
- What do do When You Lose Your Benefits Based on an “Independent Medical Examination”
- 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