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Additional CRPS-related Websites

Raising Awareness and General Information

• American RSDHope
• RSD Association of California
• Canadian RSDNetwork
• For Grace
• 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 Alert
• RSD-Arena
• RSD UK Alliance
• RSD Awareness
• SCRSDA Online
• 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
• RSD Parents Group
• Supporting Kids in Pain (Based in the UK)
• rsdescape
• Fighting against RSD is a site run by two teenage girls who have RSD.
• RSD in Motion

Research

• International Research Foundation for RSD/CRPS

Support and Chat Groups

• Pain Pal's Medical Links & RSD Support
  
• Yahoo groups on RSD
• Intrathecal Pump Information and Support Group
• iVillage RSD chat community
• RSDChat.org
• RSD Support Buddies
• Roseville RSD Support Group for Veterans
• Spinal Cord Stimulator Support Group

Website and Blog for People in Chronic Pain
www.howtocopewithpain.org
www.howtocopewithpain.org/blog

Additional Non-CRPS-related Websites

Travel

• AirLifeLine is a national nonprofit charitable organization of over 1,500 private pilots who fly ambulatory patients who cannot afford the cost of travel to medical facilities for diagnosis and treatment.
• Mercy Medical Airlift Charitable Air Transportation is a nonprofit organization dedicated to providing charitable air transportation for patients in need.
• MedicAlert provides identification and information for emergencies.

Prescription Drugs 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/conferences, support groups and sporting events.
• RXList-The Internet Drug Index This site will help you research medications and link you to other helpful sites.
• The Wheelchair Foundation is a nonprofit 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.

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.
• 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.
• AFL/CIO Web Site 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's Home Pages and Workers' Compensation Agencies This site lists sites for worker's compensation laws in all 50 states. Just click onto a state and you're in!
• Find a Reliable and Qualified Workers Compensation Lawyer iLawyer's unbiased, non-profit lawyer referral network can assist you in finding an experienced workers compensation attorney in New York, California, Texas, or Kentucky.
• Injured Workers of America (IWA) works for fair, unbiased medical evaluations when injured at work, timely treatment for t injury, adequate pain control, and the preservation of patients rights.
• Job Accommodation Network (JAN) is an international consulting service that provides information about job accommodations and employability of people with disabilities. JAN also provides information regarding the American with Disabilities Act and can link you to 250 other helpful Internet sites.
• 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.

Legal

• American Association of Nurse Life-Care Planners
• Legal Services Corporation

Pain Education

• Central Pain Syndrome Alliance
• 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
  
• NINDS Fact Sheet on CRPS
• The Mayday Pain Project goal is to increase awareness and provide objective information concerning the treatment of pain.
• National Center of Complimentary and Alterative Medicine (NCCAM)
• 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 Home Page (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.
• Office of Rare Diseases has information on more than 6,000 rare diseases.
• Pain: Hope Through Research
• 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 RSD's diagnosis, treatment, and management.
• Pain in infants, children, and adolescents: Resources for parents and professionals
• Painlaw.org is a public resource of general information on the legal aspects of pain management and end-of-life care in the United States
• Pain and Sleep Apnea. 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.
• Thermology: the study of heat using infrared thermal imaging. This is a comprehensive commercial site, maintained by Ashwin Systems International, Inc., a manufacturer of infrared thermal imaging machines.

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 non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Pain Academies, Associations, and Societies

• American Academy of Physical Medical and Rehabilitation serves the needs of practicing physical medicine and rehabilitation physicians.
• American Academy of Pain Management (AAPM) is the 'largest multidisciplinary pain society and largest physician-based pain society in the United States.' Individuals with CRPS can locate a pain-management center on this Internet site by entering their Zip Code.
• 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.
• International Association For The Study Of Pain (IASP) is an international, multidisciplinary, non-profit professional association dedicated to furthering research on pain and improving the care of patients with pain.

Medical Academies, Associations, and Societies

• American Society of Anesthesiologists (ASA)
• 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.

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.
• Internet Grateful MED v2.6.2 is a product of the United States National Library of Medicine. The program offers assisted searching in MEDLINE and other MEDLARS databases created by the National Library of Medicine.

Updated July 14, 2008