Note: 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.
General Information and Raising Awareness
- American RSDHope – rsdhope.org
- The Burning Limb Foundation gives those suffering from CRPS and related illnesses a community resource that provides advocacy and action through a lens of compassion, hope and understanding.
- Burning Nights CRPS Support – UK
- CRPS Hope & Awareness Foundation
- Network CRPS Australia
- CRPS/RSD Foundation: This foundation was set up to help crps/rsd suffers in the southern Ontario area get help with medication and equipment.
- For Grace: Founded in 2002, For Grace’s main goal is to increase awareness and promote education of the gender disparity women experience in the assessment and treatment of their pain.
- First National Network against CRPS Germany
- Korean CRPS Association
- Lehigh Valley RSD/CRPS Friends of Hope – 610-776-5992
- National Osteoporosis Foundation
- Netherlands Association of Post Traumatic Dystrophy Patients (Evidence Based Guidelines)
- Pain BC: We have a shared passion for reducing the burden of pain and making positive change in the health care system in British Columbia, Canada.
- Pain Maps – Pain Maps is a resource center dedicated to neoplastic approaches to healing pain and neurological dysfunction. In support of self education and initiative, it offers material, sources and ideas that enable non-invasive, drug-free options to pain reduction while exploring new dimensions in the narrative of neuroscience.
- Power of Pain
- P.A.R.C. (Promoting Awareness of RSD in Canada)
- International Pain Foundation (iPain) is your Power of Pain headquarters. Our mission is to educate and support the chronic pain community around the world. iPain provides community based services that address needs of chronic pain patients with conditions such as RSD/CRPS, post cancer pain, fibromyalgia, diabetic neuropathy, lyme, lupus, and more.
- The Definitive Link Library for Reflex Sympathetic Dystrophy (CRPS), Chronic Pain, and Similar Conditions
- The Mastocytosis Society is a non-profit organization dedicated to supporting patients affected by Mastocytosis and Mast Cell Activation Disorders as well as their families, caregivers and physicians through research, education and advocacy.
Youth with CRPS
- Teen Support Group – Alexi Stoev: Support Group Leader
For teens living with CRPS around the country. Alexi’s meetings will be over the phone, Skye, and IM.
To contact Alexi for information by email: firstname.lastname@example.org or phone: 941.900.5309
Online Support and Chat Groups, Forums, and Blogs
- Chronic Pain Anonymous
- In Sickness and In Health: A Place for Couples Dealing with Illness
- Intrathecal Pump Information and Support Group
- Intl Spinal Cord Stimulator Support
- NeuroTalk Communities: RSD and CRPS
- RSDSA Page on Facebook
- RSDSA Young Adult Support Group – Attention Young Adults with RDS/CRPS ages 18 – 31. RSDSA is pleased to announce the new RSDSA Young Adult Support Group Page. It will be a positive environment for young adults with RSD/CRPS to support each other and share information or experiences.
- CRPS Hope & Awareness Foundation – Nanaimo
- CRPS/RSD Awareness & Support Australia
- SCS, Ketamine, Nerve Blocks, Oh My!—Managing RSD/CRPS
- Military and Veterans with RSD
- RSD/CRPS Loved Ones and Caregivers Support Groups
- Spinal Cord Stimulator Support Group: Since the day I got my stimulator I have been wondering why there is not a support group for us. Well here it is! A place to ask questions, and get advice, or simply vent to someone who understands. All are welcome!
- Tennessee Pain Care for All
- Pregnancy/Parenting with CRPS
Other Related Websites
- Foundation for Health Coverage Education: Coverage for all through education
- The Health Care Problems Archive gathers accounts of problems with the US health care system from people involved in all facets of the system. The accounts are made available to all who are developing solutions to health care system problems.
- The Patient Advocate Foundation is a national not-for-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
- American Association of Nurse Life Care Planners
- 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 Education and Raising Awareness
- Aging.com: The complete Guide to Medical Marijuana for Seniors
- Central Pain Syndrome Alliance (CPSA)
- CIAAG (Chronic Illness Advocacy & Awareness Group, Inc. – Lauren Deluca, Tweitter: @CIAAG_Lauren: The Chronic Illness Advocacy & Awareness Group (CIAAG) envisions a world where those with disabilities and chronic illnesses are guaranteed palliative care and access to prescription life sustaining medications without stigma, fear or push-back, particularly from the medical community. We shape social narratives to promote inclusion of disabled rights and individualized patient-centered care. We lobby against political agendas and misinformation campaigns that interfere with patient’s access to vital medications and palliative care.
- Commission on Accreditation of Rehabilitation Facilities is an independent, not-for-profit organization that reviews and grants accreditation services as requested by a facility.
- The Facial Pain Association (formerly The Trigeminal Neuralgia Association) serves as an advocate for patients living with neuropathic facial pain, including trigeminal neuralgia, by providing information, encouraging research and offering support.
- For Grace is a not-for-profit organization passionately devoted to ensuring the ethical and equal treatment of all women in pain.
- 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.
- National Center for Complimentary and Alterative Medicine (NCCAM) is the Federal Government’s lead agency for scientific research on complementary and alternative medicine (CAM).
- The National Fibromyalgia Association develops and executes programs dedicated to improving the quality of life for people with fibromyalgia.
- National Institute of Neurological Disorders and Stroke (NINDS) has a listing of clinical trials for neuropathic pain and good information about CRPS.
- National Institutes of Health (NIH) Pain Consortium coordinates activities and programs related to pain research.
- National Multiple Sclerosis Society
- 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.
- NIH Office of Rare Diseases has information on more than 6,000 rare diseases.
- Pain in infants, children, and adolescents: Resources for parents and professionals
- Pain and Sleep Apnea (from the American Sleep Apnea Association) Most patients with sleep apnea do not know they have the disorder, but it should be ruled out before patients are given paid medications that can affect their respiratory drive or relax their muscles.
- The Safe Computing Tips site and blog are designed to help you be more comfortable and productive while using your computer. It will also help you reduce your risk of experiencing painful and disabling injuries or disorders such as CTS, RSI, and MSD.
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 Pain Society (APS) is a “multidisciplinary educational and scientific organization dedicated to serving people in pain.” APS publishes a directory of its members. APS will mail a free inquiry packet that contains treatment referrals for your state or you may search for a nearby pain facility online.
- 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.
Prescription Medication and Other Patient Assistance Programs
- 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 Dealer Magazine specializes in bringing products and services to the elderly and disabled community in one simple and informative publication. Each issue of Disabled Dealer Magazine also features several articles and stories on mobility assistance equipment and home medical supplies and services, the latest medical reports, new government programs and federal benefits for the disabled, and listings for events.
- RXList: The Internet Drug Index provides information on medications and other helpful sites.
- 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.
- Zero Unintentional Deaths is a campaign developed to educate physicians, people who suffer chronic pain, and the community in general about the serious issue of unintentional overdose deaths relating to methadone and other prescription medications.
- AllTreatment is a drug rehab center directory and substance abuse information resource. The website is dedicated to educating people about drug and alcohol addiction. AllTreatment.com features a complete directory of drug addiction treatment centers, an article database about alcoholism and drug abuse, a blog about current drug news, and much more.
- 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.
Social Security and Workers Compensation
- 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.
- AFL/CIO contains an excellent section on worker’s compensation: bimonthly newsletter, new court cases of interest to injured workers, and related links.
- GENEX Disability helps those with a disability navigate through the complex SSDI process so they can claim the benefits they are entitled to.
- Job Accommodation Network (JAN) is an international consulting service that provides information about job accommodations and employability of people with disabilities.
- 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.
- 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.
- Workers Comp Rx 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.
- 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.
- Southwest Medical Transporttion
Updated November 6, 2014