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CRPS-related Websites
General Information and Raising Awareness
Youth with CRPS
Research
Online Support and Chat Groups, Forums, and Blogs
Facebook
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.
The Definitive Link List for Reflex Sympathetic Dystrophy (CRPS), Chronic Pain, and Related Topics
Dr. Howard T. Black, Professor (Emeritus) of Medicinal/Organic Chemistry, Eastern Illinois University
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
- 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 of 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.
- 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.
- 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 Rehabilitation is 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.
- 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 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.
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's 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
July 29, 2010
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