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Health Conditions

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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.
  • 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.
  • 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).
  • Consumer Pain Advocacy Task Force (CPATF)
    Consumer Pain Advocacy Task Force (CPATF) is comprised of national leaders and decision-makers from 16 consumer-nonprofit organizations that are dedicated to patient well-being and supporting the use of effective methods for pain treatment. The State Pain Policy Advocacy Network (SPPAN) first convened these leaders in March 2014 to organize a collective action effort to benefit people with pain.
  • 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.
  • 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.
  • EndrocrineWeb.com
    EndrocrineWeb.com has a long legacy as the leading website serving patients and doctors with focused coverage of endocrine disorders, includig diabetic conditions like diabetic neuropathy.
  • Erythromelalgia Association (TEA)
    TEA is a nonprofit organization dedicated to supporting people with EM by maximizing their health outcomes and improving their quality of life, funding research into the causes and treatments of EM; and increasing awareness of EM among health care practitioners, patients, family members and the general public.
  • 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.
  • HealthinAging.org
    HealthinAging.org is a unique site for all older people and their caregivers. HealthinAging was created by the Health in Aging Foundation, the official foundation of the American Geriatrics Society.
  • 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.
  • Mesocare.org
    MesoCare is a free public service that is dedicated to providing, support, education and hope for patients and loved ones who have been diagnosed 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 Guide
    Our free guide answers all of your questions about mesothelioma and points you toward an improved prognosis. Let’s start by learning more about you.
  • Mesothelioma Group
    We’re a small team of healthcare professionals, patient advocates, and communication specialists who have one goal: to lead the way in supporting and encouraging mesothelioma patients and their families.
  • MesotheliomaVeterans.org
    Mesothelioma is a cancer of the lining of the lungs or abdomen that is caused by exposure to asbestos. In over 30% of all mesothelioma cases, asbestos exposure happened during military service. Veterans from all branches of service are at risk, with the most common being the United States Navy and the Marines. There are a variety of mesothelioma treatments available, as well as doctors in the VA system who are capable of treating it. Veterans Benefits are available for people in the form of VA Disability, Aid & Attendance and more. Learn more about Asbestos in the military and the benefits available for you.
  • National Association For Continence
    National Association For Continence is a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence. NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence NAFC’s objectives are to destigmatize incontinence, to promote preventive measures, to motivate individuals to seek treatment, and to provide collaborative advocacy and service for those who are affected by this problem. To achieve its objectives, NAFC offers publications and services, such as: Blueprint for Continence Care in an Assisted Living Setting, a guidepost of standards offering simple, cost-effective practices for the prevention, assessment, management, and treatment of bladder control problems in assisted living.
  • 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 & Chronic Pain Association
    The National Fibromyalgia & Chronic Pain Association unites patients, policy makers, and healthcare, medical and scientific communities to transform lives through visionary support, advocacy, research and education of fibromyalgia and chronic pain illnesses.
  • 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.
  • 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.
  • 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.
  • PainSpot
    PainSpot is dedicated to providing you with information about your pain. We understand how pain affects your daily life, and wish to provide you with an easy-to-use website to help you find relief from your pain. We hope this information helps you explain your symptoms to your health care provider, as well as educating you about painful musculoskeletal diseases. We do not diagnose what you have, but rather create a risk-list of diagnostic possibilities. This list is then used to direct you toward our disease summaries and other educational resources.
  • 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 12th 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.
  • Rheumatoid Arthritis Support Network
    Rheumatoid arthritis (RA) doesn’t have to stop you from living your life. Although the symptoms of RA can be painful, there are many treatments and therapies to help you take your life back.
  • Shinglesinfo
    Shinglesinfo.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.
  • 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 Cancer Foundation
    The National Pancreatic Cancer Foundation strives to provide quality of life, sustainability and dignity to those we serve. Through our volunteers we provide an opportunity of hope and caring for those afflicted by this devastating disease. We also provide the opportunity for those family members to help fight the 4th leading cause of cancer deaths in the United States. There is no known cure, however, there are new developments everyday to prolong and sustain the quality of life of the patient.
  • 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.
  • 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.
  • 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.