During our almost 40-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
Below 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. By clicking on these links you will be leaving the RSDSA website. These links are provided as a service to our readers and are neither a guarantee nor an endorsement of the products or services offered. RSDSA is not responsible for the content on other websites.
Aging.com: The complete Guide to Medical Marijuana for Seniors
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.
Directory of Prescription Drug Patient Assistance Programs provides the contact information on pharmaceutical companies that provide prescription medicines free of charge to physicians (also available in PDF format).
Disabled Advantage Dog Training & Consulting, LLC is dedicated to helping others with CRPS train their own service dog in the U.S., and coaching people with CRPS anywhere in the world.
For Grace is a not-for-profit organization passionately devoted to ensuring the ethical and equal treatment of all women in pain.
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 live 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.
National Organization for Rare Disorders (NORD) is a clearinghouse for information concerning disorders affecting fewer than 200,000 individuals worldwide. NORD also sponsors an on-line used medical equipment exchange and publishes two newsletters: Orphan Disease Update and NORD Online.
National Institutes of Health (NIH) Pain Consortium coordinates activities and programs related to pain research
NIH Office of Rare Diseases has information on more than 6,000 rare diseases
PubMed is a service of the U.S. National Library of Medicine that includes over 18 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.
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.
Síndrome de dolor regional complejo – CRPS support in Español
Support for People With CRPS By Phyliss Shanken, MA
The Wheelchair Foundation is a not-for-profit organization leading an international effort to create awareness of the needs and abilities of people with physical disabilities, to promote the joy of giving, create global friendship, and to deliver a wheelchair to every child, teen and adult in the world who needs one, but cannot afford one.
Finding a Physician and Medical Treatment
RSDSA maintains a treatment referral list for most states. Email us at [email protected] for a list. We do not endorse or recommend pain or rehabilitation specialists. Our list is provided as a public service only. If you would like to suggest a particular medical professional or pain/rehabilitation center to our list, please contact us.
Additional resources include:
RXList: The Internet Drug Index provides information on medications and other helpful sites.
International Association for Cannabis as Medicine (IACM) is a scientific society that advocates the improvement of the legal situation for the use of the hemp plant (Cannabis sativa L.) and its pharmacologically most important compounds, the cannabinoids, for therapeutic applications through promotion of research and dissemination of information. Pain-related cannabis-related research is also available here.
Legal Services Corporation (LSC) operates as a private, nonprofit corporation that promotes equal access to justice and provides grants for high-quality civil legal assistance to low-income Americans. LSC distributes more than 95 percent of its total funding to 137 independent nonprofit legal aid programs with 918 offices that provide legal assistance to low-income individuals and families in every congressional district.
The National Veterans Legal Services Program (NVLSP) is an independent, not-for-profit, charitable organization acting to ensure that the US government honors the pact made with our 25 million ve terans. They provide Advocacy and Training, Education and Publications, and Pro Bono Litigation. NVLSP also recruits, trains, and assists thousands of volunteer lawyers and veterans’ advocates. Their publications empower veterans, their families and their advocates to obtain the benefits they’re entitled to by clearly outlining their rights under the law.
Pain-related Academies, Associations, and Societies
American Academy of Physical Medical and Rehabilitationis the national medical society representing more than 7,500 physicians who are specialists in the field of physical medicine and rehabilitation (PM&R).
American Academy of Pain Management is the largest interdisciplinary pain society and largest physician-based pain society in the United States.
American Chronic Pain Association (ACPA), a non-profit organization with more than 800 chapters, provides a support system through group activities to those suffering chronic pain. ACPA publishes guidelines to help select a pain unit and a quarterly newsletter.
American Society of Anesthesiologists (ASA) is an educational, research and scientific association of physicians organized to raise and maintain the standards of the medical practice of anesthesiology and improve the care of the patient.
International Association For The Study Of Pain (IASP) is an international, multidisciplinary, not-for-profit professional association dedicated to furthering research on pain and improving the care of patients with pain.
The International Pelvic Pain Society was established in 1996 with two primary objectives: to educate health care professionals how to diagnosis and manage chronic pelvic pain, thereby changing the lives of patients worldwide; and to bring hope to men and women who suffer from chronic pelvic pain by significantly raising public awareness and impacting individual lives.
US Pain Foundation: An organization created by people with pain for people with pain, U.S. Pain recognizes and validates the challenges 50 million Americans endure every day. We strive to be the leading source of support for those living with pain, as well as their caregivers and care providers. U.S. Pain is here to offer validation, information, support, and above all—hope.
The Compassionate Friends: The mission of The Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive.
Scholarships and Financial Resources
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
The Hannah Bernard Memorial Scholarship is available to anyone fighting complex pain conditions and pursuing their education, including high school, college and online courses. A $600 scholarship will be awarded to the winner in memory of Hannah Bernard! applications for the Hannah Bernard memorial scholarship 2021 will be accepted January 1st – April 30th.
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.
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.
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.
SpinLife.com Innovation in Motion Scholarship Program: A program designed to aid college students in their academic endeavors.
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.
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.
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.
AllSup, Inc. is a nationwide Social Security Disability Insurance benefits provider with a 97% success rate. Allsup is a great resource for disabled people, and helps make receiving their SSDI benefits easier.
GENEX Disability helps those with a disability navigate through the complex SSDI process so they can claim the benefits they are entitled to.
How to Lose Your Case in 12 Easy Steps: By R. Steven Shisler, Esq.
Job Accommodation Network (JAN) is an international consulting service that provides information about job accommodations and employability of people with disabilities.
National Organization of Social Security Claimant’s Representative (NOSSCR) provides representation and advocacy on behalf of people who are applying for Social Security and Supplemental Security.
ServRx is a pharmacy service for injured workers with open claims. It provides injured workers medications when they need them without any out-of-pocket costs.
Tactics for Social Security Disability: By Debra Sjolseth
Winning Your Disability Case in Three Words: Frequency, Severity and Duration: By Scott E. Davis, Esq.
Workers’ Compensation 101: An Overview of WC for Employees With Work-related CRPS: By R. Steven Shisler, Esq.
Air Charity Network provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis.
Mercy Medical Airlift Charitable Air Transportation is a not-for-profit organization dedicated to providing charitable air transportation for patients in need.