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Health Conditions

This section includes links to organizations with an interest in a specific health condition and also includes links to sites with information on children and pain.

General

• Action on Pain
  Action on Pain is a growing and vibrant national charity founded in 1998 to provide practical help and support to people living with or affected by chronic pain, irrespective of type, cause or origin, in order that they are able to still enjoy life to the full.
• AfterShingles.com
  AfterShingles.com is an educational resource offering tools and information to help educate consumers about shingles and postherpetic neuralgia (PHN), or after-shingles pain, its impact on people’s lives and steps to take to help manage this condition.
• Alliance of State Pain Initiatives
  The Alliance of State Pain Initiatives (ASPI) is a network of state-based Pain Initiative organizations that work to remove the barriers that impede pain relief through education, advocacy and institutional improvement.
• Alzheimer's Information Site
  The Fisher Center for Alzheimer's Research Foundation is dedicated to attacking the scourge of Alzheimer's with a 3-pronged assault focused on the cause, care, and cure for Alzheimer's disease as well as supporting the public with educational programs.
• American Federation for Aging Research (AFAR)
The American Federation for Aging Research’s mission is to support and advance healthier aging through biomedical research.  Since 1981, AFAR has awarded nearly $140 million to more than 3,000 scientists, helping them begin and further their careers in gerontology and geriatric medicine.
• Arthritis Foundation
  The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.
• Association for Repetitive Motion Syndromes (ARMS)
  The Association for Repetitive Motion Syndromes (ARMS) is a not-for-profit organization committed to assisting workers at-risk or injured by repetitive motion syndromes. ARMS also provides assistance to employers, workers compensation specialists, and health care professionals. Assistance is available in the United States and abroad through the internet, by telephone, and through written information packets.
• Back Pain Expert
  Back Pain Expert was formed to offer a unique reference point on exploring back pain remedies, treatments and pain relief.
• Brain and Spinal Cord Injury
  BrainandSpinalCord.org's mission is to be the most reliable, timely and complete resource on the internet for brain injury and spinal cord injury survivors. Our hope is that this site will become relied upon as a trustworthy resource for the community and for those who are searching for information.
• US Bone and Joint Decade
The mission of the United States Bone and Joint Decade (USBJD) is "to promote and facilitate collaboration among the public, patients, and organizations to improve bone and joint health through education, research and advocacy. To be the effective coalition of patient-focused and professional organizations that improves bone and joint health in all persons in the United States.
• Canadian Pain Coalition
  The Canadian Pain Coalition is a Partnership of patient pain groups, health professionals who care for people in pain, and scientists studying better ways of treating pain. This partnership began in May 2002 as an initiative of the Canadian Pain Society, which remains an active partner.
• Central Pain On-Line (a self-help organization of The Stroke Network)
  Provide on-line support to stroke survivors and stroke caregivers of adult stroke. On-line stroke support organization and are available to everybody, worldwide. Since 1996 they have provided on-line stroke support and information to well over 100,000 of visitors to the site.
• Central Pain Syndrome Alliance (CPSA)
  Making a difference by connecting people around the globe with others who share a common bond of Central Pain. This site offers resources, links and articles.
• Charcot-Marie Tooth
  The Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which raises awareness, funds scientific research, and educates the medical community as well as the general public about Charcot-Marie-Tooth disease (CMT). HNF is committed to providing support to people living with CMT and their families. Through its comprehensive social networks within Facebook, Twitter and Inspire, the sponsorship of critical awareness projects such as the production of the documentary Bernadette's Song and the children's book Arlene On the Scene, and the distribution of the Essential Guides, HNF offers the information, resources, and connections people need to live strong with CMT.

• Chronic Fatigue Syndrome
  The CFIDS Association of America is the largest and most active charitable organization dedicated to conquering chronic fatigue syndrome (CFS), which is also known as chronic fatigue and immune dysfunction syndrome (CFIDS). 

• CRohn's and Colitis Foundation of America (CCFA)
  The Crohn’s and Colitis Foundation of America (CCFA) is a non-profit organization with a mission of finding a cure to Crohn’s disease and ulcerative colitis, while assisting those affected by the diseases through educational materials, improvement in lifestyle, and support. CCFA seeks to ensure that patients visiting our website, www.ccfa.org, have access to helpful resources related to Crohn’s disease and ulcerative colitis.

• Cure Arthritis Now!
  CAN! was started in 2004 by a small group of arthritis patients who were frustrated by the lack of public awareness about arthritis and related diseases, and by the lack of advocacy for arthritis patients. CAN! provides advocacy, research & education.

• EM Painline
  EM Painline is a resource for those striving to improve the management of pain in our emergency departments. Our goal is to close the gap between existing knowledge and daily pain management practice. By improving access to current research literature pertaining to emergency medicine practice as well as to other tools and resources, and by building a network of emergency medicine researchers, practitioners and educators dedicated to this goal, we will move toward achieving a truly “painless” Emergency Department.
• FDA
The FDA just released new guidelines for taking acetaminophen. The U.S. Food and Drug Administration is asking manufacturers of prescription combination products that contain acetaminophen to limit the amount of acetaminophen to no more than 325 milligrams (mg) in each tablet or capsule.
• FibroCenter for people with Fibromyalgia
  A community of support, education and understanding which offers information to empower the fibromyalgia community and to foster positive dialogue.
• Hereditary Neuropathy Foundation
The Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 which raises awareness, funds scientific research, and educates the medical community as well as the general public about Charcot-Marie Tooth disease (CMT), offering people with CMT, and their families, medical information and emotional support. HNF is supported by a wide cross-section of medical experts, researchers, professionals, and a huge network of individuals and families from all walks of life.
• International Endometriosis Association
  The International Endometriosis Association was the first organization in the world created for those with endometriosis. As an independent self-help organization of women with endometriosis, doctors, and others interested in the disease, it is a recognized authority in its field whose goal is to work toward finding a cure for the disease as well as providing education, support, and research.
• Irritable Bowel Syndrome
  The Irritable Bowel Syndrome (IBS) Self Help Group, established in 1987, is an award-winning patient advocate group in support of guided self-management for those who suffer from IBS, those who are looking for support for someone who has IBS, and medical professionals who want to learn more about IBS. The IBS Self Help and Support Group is the largest on-line community for people with Irritable Bowel Syndrome.
• Jaw Joints & Allied Musculo-Skeletal Disorders Foundation, Inc.
  Our mission is to promote awareness, education, research and prevention of TMJ disorders
• Lupus Foundation of America
  The Lupus Foundation of America is the nation’s leading nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support and services to all people affected by lupus.
• Mayday Pain Project
  The Mayday Pain Project was created in 1997 by an educator and a pharmacist with critical care nursing experience and funded by a grant from the Mayday Fund of New York.
• Mesothelioma Cancer
  MesoLink.org is a site created to provide you with up to date information on the deadly disease Mesothelioma. We strive to provide the most complete overview of the disease and all aspects of it. This includes general information on the disease, breaking news on the search for a cure and perspective legislation designed to limit you as well as all other news on the subject, links to other sites and online resources that can provide important and in-depth Mesothelioma and cancer related information, and a legal guide to help you with the complex legal issues involved with Mesothelioma.
• MESOTHELIOMA COMMON QUESTIONS
  Peritoneal mesothelioma is a cancer of the lining of the abdominal cavity. This form of cancer makes up approximately one-fifth to one-third of the total number of mesothelioma cases diagnosed.
• Mesothelioma Information and Resource Group
  MIRG is an organization created to assist patients, families and loved ones in learning about mesothelioma and other asbestos injuries. It is the aim of MIRG to provide information and news about the disease, its causes, its treatment and its personal and legal impact.
• Mesothelioma Treatment
  Asbestos.com is committed to providing the latest, up-to-date information to our visitors in the hopes of spreading awareness about the dangers of asbestos cancer. This website offers a one-stop resource on all asbestos issues ranging from occupational exposure to mesothelioma treatment options. As the leading asbestos and mesothelioma resource, Asbestos.com offers more than 2000 pages of the most comprehensive and cutting edge information on the web.
• National Center for Complementary and Alternative Medicine (NCCAM)
  The National Center for Complementary and Alternative Medicine (NCCAM) at the National Institutes of Health has developed the NCCAM Clinical Digest to provide both patients and health care providers with evidence-based information on CAM, including scientific literature searches, summaries of NCCAM-funded research, fact sheets for patients, and more.
• National Fibromyalgia Association
  The National Fibromyalgia Association (NFA) is the largest nonprofit [501(c)3] organization working to support people with fibromyalgia and other chronic pain illnesses.
• National Headache Foundation
  The National Headache Foundation exists to enhance the healthcare of headache sufferers. It is a source of help to suffers’ families, physicians whom treat headache suffers’, allied healthcare professionals and to the public.
• National Osteonecrosis Foundation
  Help for persons with AVN by offering moral support, comfort, and an opportunity to learn all that they can about this destructive bone disease.
• National Vulvodynia Association
  The National Vulvodynia Association (NVA) is a nonprofit organization created in 1994 to improve the lives of individuals affected by vulvodynia, a spectrum of chronic vulvar pain disorders. The NVA coordinate a centralized source of information on suspected causes, current treatments, and ongoing research for health care practitioners and patients.
• North American Spine Society
  NASS is a multidisciplinary medical organization dedicated to fostering the highest quality, evidence-based, and ethical spine care by promoting education, research, and advocacy. NASS is comprised of more than 4,400 members from several disciplines including orthopedic surgery, neurosurgery, physiatry, neurology, radiology, anesthesiology, research, physical therapy and other spine care professionals.
• Osteoarthritis (OA) Action Alliance
  The Osteoarthritis (OA) Action Alliance is a national coalition of concerned organizations mobilized by the Arthritis Foundation and the Centers for Disease Control and Prevention (CDC). This coalition is committed to elevating OA as a national health priority and promoting effective policy solutions that aim to address the individual and national toll of OA. In addition, the OA Action Alliance, with the public health community, is working to ensure people with OA have the access, skills and capacity to benefit from effective and proven interventions.
• Pain Connection
  Pain Connection is a 501(c)(3) not-for-profit human service agency that provides monthly support groups (in Montgomery, Prince George's, Howard, and Anne Arundel Counties and Washington DC), Speakers Series in Silver Spring, newsletter, website, information and referrals and community outreach and education.
• Pain.com
  The Dannemiller Memorial Educational Foundation affirms its commitment to researching, developing, and providing quality medical educational and informational content to our users absolutely free in a quality online format. By providing a variety of accredited activities for physicians, pharmacists and nurses, the Dannemiller Memorial Educational Foundation seeks to foster an environment where health care professionals can grow in their knowledge and management of pain and its management.
• PAINEDU.ORG
  PainEDU.org is developed by Inflexxion, Inc. through an unrestricted educational grant from Endo Pharmaceuticals. PainEDU is an educational website for clinicians, teaching about pain assessment and management. This site is a comprehensive resource and is based on the latest scientific information about pain treatment.
• PainLink
  The Mayday PainLink website is an archived website. It includes project work from 1995 through 2001. Much of the content remains applicable to improving pain management in institutions.
• PainManagement.org.uk
  Provides information on the common problems seen in the pain clinic and about the chronic pain service provided at the Royal Shrewsbury Hospital and the Shropshire Nuffield Hospital.
• PainSupport
  Pain Support provides advice and information about self-help pain relief and pain management techniques. These techniques can happily be used alongside conventional drugs and medical therapies. No matter where your pain is, back pain, neck pain, leg pain, arthritis, sciatica, fibromyalgia, etc., help is here.
• Peripheral Neuropathy
  Peripheral neuropathy describes damage to the peripheral nervous system, which transmits information from the brain and spinal cord to every other part of the body.
• PREP Program Forum
This is where we will be posting videos/audios and other links to matters of interest to you, our PREP Community, potential students, and others connected to pain studies. You’ll find the video of Melanie Thernstrom, a NY Times/ New Yorker writer who presented a talk to the Tufts community April 12^th on her new best-seller: ‘The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering.’ There is also a link to an NPR audio featuring Dan Carr from September 2010. Keep checking in to see more additions… Dr. Gallagher’s talk of tomorrow will be up there next week.
• Reflex Sympathetic Dystrophy Snydrome Association of America
  RSDSAA's mission is to promote public and professional awareness of CRPS and to educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it causes. We encourage individuals with CRPS to offer each other emotional support within affiliate groups. And finally, we are committed to raising funds for research into the cause and cure of CRPS.
• Self-Help Clearninghouse
  A keyword-searchable database of over 1,100 national, international, model and online self-help support groups for addictions, bereavement, health, mental health, disabilities, abuse, parenting, caregiver concerns and other stressful life situations.
• Sickle Cell Disease Association
  To Promote Finding a Universal Cure for Sickle Cell Disease while Improving the Quality of Life for Individuals and Families where Sickle Cell Related Conditions Exists.
• Sickle Cell Information Center
  The mission of this site is to provide sickle cell patient and professional education, news, research updates and world wide sickle cell resources. It is the mission of our organizations to provide world class compassionate care, education, counseling, and research for patients with sickle cell disease. It is our mission to help break the sickle cycle. The information provided on this site is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician.
• Syringomyelia
  Information and Resources on Syringomyelia.
• The Christopher and Dana Reeve Paralysis Resource Center
  The Christopher and Dana Reeve Paralysis Resource Center (PRC) promotes the health and well-being of people living with spinal cord injury, paralysis and mobility impairment by providing comprehensive information, resources and referral services.
• The National Pancreas Foundation
  To support the research of diseases of the pancreas and to provide information and humanitarian services to those people who are suffering from such illnesses.
• TheLancet.com, a division of Elsevier
  The Lancet's prestigious heritage as one of the world's leading medical journals continues to inspire our authors and editors today as they strive for medical excellence in all that they publish.
• TMJ Association, Ltd.
  The TMJ Association (TMJA) is a patient based advocacy organization, whose mission is to provide information on Temporomandibular Joint and Muscle Disorders (TMJDs) to the patients, public and healthcare professionals. They offer support to those who suffer from TMJDs. We advocate for basic and clinical scientific research that will eventually yield the causes of TMJDs, as well as treatments scientifically proven to be safe and effective. We serve as a national resource center for TMJDs.
• Trigeminal Neuralgia Association
  The mission of TNA (Trigeminal Neuralgia Association) is to serve as an advocate for patients living with TN (Trigeminal Neuralgia) and related facial pain conditions by providing information, encouraging research and offering support.
• VZV Research Foundation for Shingles and Post Herpetic Neuralgia
  FAQ's, Resources and information about Shingles and Post Herpetic Neuralgia.

Children & Pain

• American Academy of Pediatrics
  An organization of 60,000 pediatricians committed to the attainment of optimal physical, mental and social health and well-being for all infants, children, adolescents, and young adults.

• American Pain Society
  Information about chronic pain in children and young adults.

• Kids Health
  KidsHealth is the largest and most-visited site on the Web providing doctor-approved health information about children from before birth through adolescence.

• National Association of Children's Hospitals
  NACH is a not-for-profit organization of children's hospitals, large pediatric units of medical centers and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses. We are a voice for health systems devoted to the well-being of America's 70 million children and their families and we work to ensure children's access to health care and the continuing ability of children's hospitals to provide services needed by children.

• Shriners Hospitals
  The Shriners of North America are dedicated to fun and fellowship...but with a serious purpose. Shriners enjoy many opportunities to find personal fulfillment and satisfaction through supporting Shriners Hospitals for Children.