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CRPS-related Websites

General Information and Raising Awareness

• American RSDHope
• Israel Society for Fighting Pain (English)
• Korean CRPS Association
• Lehigh Valley RSD/CRPS Friends of Hope
• Netherlands Association of Posttraumatic Dystrophy Patients (Evidence Based Guidelines
• Promoting Awareness of RSD in Canada
• Rocky Mountain RSD/CRPS
• RSD Association of California
• RSD Alert
• RSD-Arena
• RSD Iceland
• RSD UK Alliance
• RSD Awareness
• RSD CRPS Lifesavers
• SCRSDA Online
• Team RSD: Racing for Awareness and Research
• Triumph Over Pain
• The Definitive Link Library for Reflex Sympathetic Dystrophy (CRPS), Chronic Pain, and Similar Conditions
• The Lindsay Wurtenberg RSD Foundation raises funds for patients going to Germany for the ketamine coma treatment.

Youth with CRPS

• Aya's No Pain Zone
• Fighting against RSD
• Kids in Pain
• RSD Parents Group
• rsdescape
• RSD in Motion

Research

• International Research Foundation for RSD/CRPS

Online Support and Chat Groups, Forums, and Blogs

• Disability Resource Exchange
• In Sickness and In Health: A Place for Couples Dealing with Illness
• Intrathecal Pump Information and Support Group
• Intl Spinal Cord Stimulator Support
• iVillage RSD chat community
• Multiple.com Online Support Group for RSD/CRPS
• My Chronic Pain Relief
• NeuroTalk Communities: RSD and CRPS
• Pain Pal's Medical Links & RSD Support
• Peace in Pain Online Forum
• RSDLaughter.com (Where Laughter is the Best Medicine)
• RSD Support Buddies
• Reflex Sympathetic Dystrophy Support Network on NING
• Reflex Sympathetic Dystrophy: A Fighting Chance
• Roseville RSD/CRPS Support Group for Veterans
• Spinal Cord Stimulator Support Group
• TheJabberBox
• Yahoo groups on RSD

Facebook

• RSDSA Page on Facebook
• RSD Mothers & mom wanna-be's Group
• RSD aka Really Sucks Dystrophy Group
• Ketamine Klub for RSD/CRPS Patients Group

How To Cope With Pain
Website and Blog for People in Chronic Pain

Physicians for Patients
Physicians for Patients is the online version of a physician mediated support group for patients, families, and friends of those with Complex Regional Pain Syndrome.

Other Related Websites

Healthcare

• Searching for a pain specialist or pain clinic in your area? The Dannemiller Foundation has compiled for your use a list of hundreds of pain specialists and pain clinics from all over the globe.
• Foundation for Health Coverage Education: Coverage for all through education
• Health Assistance Partnership provides help an resources in the areas of Medicaid, Medicare, private insurance, and for those who are unisured.
• 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.
• Health Insurance Portability and Accountaility Act (HIPAA)
  This interactive tool, provided by the Federal Government, helps answer your questions about health coverage and your rights and protections under the HIPAA. If you have questions on getting and continuing health coverage during events such as losing or changing jobs, pregnancy, moving, or divorce, you can get answers here. If you are an employer, you can get answers to common questions about getting and renewing group health coverage for your employees.
• 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.
• PrivateHealthAdvice was formed to offer a unique reference point on how private healthcare works in the uk. A resource for learning how private healthcare works: treatments, waiting time, costs, exclusions, aftercare and association with the NHS.

Legal

• 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

• Central Pain Syndrome Alliance (CPSA)
• Commission on Accreditation of Rehabilitation Facilities is an independent, not-for-profit organization that reviews and grants accreditation services as requested by a facility.
• Diabetic Neuropathy Information
• 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.
• The Mayday Pain Project goal is to increase awareness and provide objective information concerning the treatment of pain.
• 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.
• The National Foundation for the Treatment of Pain provides support for people suffering from intractable pain, their families, friends, and the physicians who treat them. It is also a resource for medical professionals and attorneys concerned with legal issues regarding the legitimate treatment of pain.
• 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.Com is an excellent resource for both professionals and consumers. It has a special "Ask the Doctor" section that contains frequently asked questions and answers about CRPS diagnosis, treatment, and management.
• 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.
• Pain Treatment Topics serves as a noncommercial resource for healthcare professionals & their patients, providing open access to clinical news, information, research, and education for a better understanding of evidence-based pain-management practices.
• Thermology: the study of heat using infrared thermal imaging is a comprehensive commercial site, maintained by Ashwin Systems International, Inc., a manufacturer of infrared thermal imaging machines.

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 Foundation (APF) is a patient information, education and advocacy organization, helping those who suffer from pain.
• 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.
• Diplomates of the American Board of Pain Medicine is a listing of physicians who have been certified as specialists in the field of pain medicine.
• 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.

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.

Research

• The Computer Retrieval of Information on Scientific Projects (CRISP) is a searchable database that contains information regarding federally-funded biomedical research projects conducted at universities, hospitals, and other research institutions. This site allows users to research scientific concepts, emerging trends and techniques, or identify specific projects and/or investigators.
• 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.
• All 50 States and DC Home Pages and Workers' Compensation Agencies This site lists sites for worker's compensation laws in all 50 states.
• Find a Reliable and Qualified Workers Compensation Lawyer iLawyer's unbiased, not-for-profit lawyer referral network can assist you in finding an experienced workers compensation attorney in New York, California, Texas, or Kentucky.
• 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 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.

Travel

• 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.
• MedicAlert provides identification and information for emergencies.

Updated March 1, 2010