A Beginner’s Guide to Multiple Sclerosis
This Healthnet Canada award-winning site includes over 80 commented links on multiple sclerosis, diagnostic, support groups, the medications, MS chats and forums. The site discusses MS as a disease and a condition, life before and after diagnosis, possible causes, medication and research. All information is available in English and in French.
A Patient’s Frequently Asked Questions about Fibromyalgia
These pages provide concise, understandable information for fibromyalgia patients. This information includes a description of the condition, causes, treatments, medication, lifestyle factors (sleep, exercise, stress, etc.), and location of fibromyalgia tender points. There are also sections dealing with support and education, remission, and finding a fibromyalgia specialist.
Acoustic Neuroma Archives
This informational web site is "dedicated to providing newly diagnosed Acoustic Neuroma patients with information to help evaluate their treatment options and to make an informed decision." These archives, which offer some information in French and Portuguese, discuss myths, treatments, resources and how to deal with the medical establishment, as well as including personal stories and poems, and links to other acoustic neuroma related sites.
Acoustic Neuroma Association
"The Acoustic Neuroma Association provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves." This site answers frequently asked questions, provides some basic, general information regarding detection and treatment, and offers a glossary of relevant terms. There is also a selection of e-mail list support groups on this site.
Acoustic Neuroma Association of Canada
This site, though currently under construction, provides helpful information on treatment options, facial rehabilitation, acute management, as well as related conditions such as headache, memory loss, hearing loss, fatigue, pain, balance problems, etc. There are message boards, and a specific section for members.
Acoustic Neuroma Story Index
This site consists of the personal accounts of acoustic neuroma patients. By no means intended as medical advice, these stories provide interesting reading in terms of treatment, procedures, support and education. "The stories are provided strictly for informational purposes only as told by people from all walks of life providing candid, honest, and sometimes scary comments on each individual experience."
ALS Society of Canada
"Our goal is to help you understand more about ALS, the ALS Society of Canada and what resources we provide. In an effort to communicate our message to the public, we have built this Web Site to provide information and a platform for communications amongst our members. This is a place for people who have ALS and those that want to find out more about this disease that affects six or seven people out of every 100,000."
ALS Survival Guide
This is a compact site which gives a list of 41 FAQ’s about this disease, as well as causes and treatments. This site also addresses legal/financial and advocacy issues. There is information on adaptive equipment, caregivers, vital statistics, related links and other resources.
ALS – Doctors Guide to the Internet
This site offers "the latest medical news and information for patients or friends/parents of patients diagnosed with ALS and ALS-related disorders." This site is composed of lists of helpful links, grouped into the following sections: medical news and alerts, ALS information, and discussion groups and newsgroups. There is also the possibility of receiving e-mail notification to stay abreast of further ALS developments on the Internet.
ALS/MND
"This site explores the possible effect of Anti Oxidants, Liver Function and readily available medications, supplements and therapies on the progress of (ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neuron Disease." There is also information on diet, mental attitudes, and theories and research. This site is primarily text, and can be cut and pasted into a word processing application, or saved to a file for easy access off-line.
Alzheimer Europe
The Alzheimer Europe site is divided into the following sections: projects, Alzheimer’s facts and info, European Union and Alzheimer’s Disease, news and events, and links to other sites. This web site, which may be viewed in as many as eleven different languages, also features a telephone help line.
Alzheimer Society of Canada
The Alzheimer Society of Canada states as its mission "to alleviate the personal and social consequences of Alzheimer Disease, and to promote the search for a cause and cure for the disease." This website, which can be viewed in French or English, contains information about Alzheimer’s disease, care giving, news, and events, a caregivers’ forum, physicians’ corner and research information. This site helps first time users to navigate this web site. There are also listings of international Alzheimer offices located in Canada.
Alzheimer Society of Ottawa-Carleton
The Alzheimer Society of Ottawa-Carleton offers patients and families information about their chapter, listings of other Canadian Alzheimer Chapters, news, events, articles, kids zones, and links to other related web sites.
Alzheimer Society of Toronto
The Alzheimer Society of Toronto offers patients facts about the disease, a resource center, research, fund development and volunteer programs. The site also provides newsletters, education counseling, and telephone counseling.
Alzheimer's Disease Education and Referral Center (ADEAR)
The Alzheimer’s Disease Education and Referral Center site, a service of the National Institute on Aging, provides fact sheets on specific, Alzheimer’s-related problems such as depression, forgetfulness, and planning for long term care. The site also offers research and technical reports, a bibliographic and clinical trials database, and links to other Federal American resources. The information on this site is practical and relevant.
Alzheimer’s Association
The Alzheimer’s Association site provides facts about Alzheimer’s Disease, care resources for families and health care professionals, medical issues such as diagnosis and treatment, and innovative research. This site also includes news updates and information about the Association.
Alzheimer’s Disease Review
"Alzheimer’s Disease Review offers discussion of the latest advances in research on Alzheimer’s Disease and related disorders. Articles are peer-reviewed and accompanied by invited commentaries." On this site there’s information about ADR, Author Info, editorial board, and related web sites.
Alzheimer’s Disease Society
The Alzheimer’s Disease Society offers news and events concerning dementia, advice on caring for patients, questions about the disease, care giving, and other forms of dementia. The site features a content list, which has alphabetically organized groups of links related to Alzheimer’s and dementia.
Alzheimer’s Disease – Doctor’s Guide to the Internet
This site provides "the latest news and information for patients, families and friends of patients diagnosed with Alzheimer’s Disease and Alzheimer’s-related disorders." On this site there are up-to-date medical news and alerts, Alzheimer’s Disease information, discussion groups and newsgroups, Alzheimer’s Disease developments on the Internet, and related links.
American Brain Tumor Association
This award-winning site provides extensive information on brain tumors (including texts and diagrams about diagnosis, treatment and effects, and a dictionary of terms with pronunciations) and clinical trials / research. This site also offers a comfort and resource section which includes personal stories of brain tumor patients, help with side effects, and links to related sites and chat rooms.
Ask NOAH About: Aging and Alzheimer’s Disease
The Ask NOAH (New York Online Access to Health) Project helps patients find what they need to know about Aging and Alzheimer’s Disease. The site explains basic information, care and treatment, research, and information resources of both diseases.
Ask NOAH About: Batten Disease
This page, from the New York Online Access to Health, offers a number of links which provide helpful information on Batten Disease.
Ask NOAH About: Headache
This site is divided into three main sections: what is headache (explaining the basics, diagnosis, and different types of headaches), care and treatment (basic care, drug therapies, headache management by type, and living with a headache), and related concerns (headache in children, stroke / cerebrovascular disorders, etc.). These topics are explained through a collection of articles.
Ask NOAH About: Multiple Sclerosis
This site is composed of lists of links which deal with diagnosis and symptoms, possible causes, statistics, care and treatment (exercise, medications, nutrition, therapies), complications and related concerns (continence, fatigue, mental issues, pregnancy), and information resources (advocacy and support groups, care center, children’s resources, online newsletters and magazines, and research).
Ask NOAH About: Muscular Dystrophy
This site consists of groupings of helpful links which deal with basic information on MD, genetics and diagnosis, specific types of MD, care and treatment and informational resources.
Ask NOAH About: Myasthenia Gravis
This site consists of groupings of helpful links which deal with basic information on Myasthenia Gravis, diagnosis, care and treatment, complications and related concerns and informational resources.
Ask NOAH About: Neurological Problems
The New York Online Access to Health (Ask NOAH) service "seeks to provide high quality full-text health information for consumers that is accurate, timely, relevant and unbiased." This page, on neurological problems, offers detailed information on a number of neurological and neuromuscular disorders, including cerebral palsy, chronic fatigue syndrome, fibromyalgia, epilepsy, Huntington’s disease, multiple sclerosis, muscular dystrophy, Parkinson’s disease, and Tourette syndrome.
Autism Resources
This excellent, detailed site offers a large, classified index of links, a Frequently Asked Questions memo with a wealth of information and background material on autism, advice to parents who discover their child is autistic, and collected information about autism-related books.
Autism Society of America
"The mission of the Autism Society of America is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism." This site offers research information, news and a mailing list.
Autism Spectrum Disorders
This in-depth informative website offers an overview of ASD, related disorders and coexisting conditions, occupational therapy, tactile and sensory defensiveness, improving motor coordination, teaching students with ASD, the social use of language, and related journal articles and links.
Autistics.org
This site offers "resources by and for persons on the autistic spectrum", including an autism information library, web links, software, disability resources list, chat and support functions, and a number of other interesting links.
Batten Disease Family Association
This British association aims "to provide a supportive, informative, networking organization for the families, careers and professionals giving care to children and adults with Batten disease." This site offers information on infantile, late infantile, juvenile, and adult Batten disease, as well as news and related links. This site also includes support functions such as a newsletter, and a guest book.
Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) aims to "be an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease." Although the BDSRA requires a membership fee for specific services, the website offers excellent information free of charge. In addition to Batten Disease facts and fiction, the site includes the latest news, related links, a bulletin board, and chat rooms for adults, teens and children.
Canadian Association for Williams Syndrome
"The association evolved from a parent support group in Vancouver, B.C. in 1984. It exists to provide support and assistance to families with a child affected by Williams Syndrome, a network and ‘family’ for adults with Williams syndrome and to actively support research into educational, behavioural, social and medical aspects of the syndrome." This helpful, informative site offers information on the following topics: educational strategies, medical guidelines, and facts about WS. This site also includes photos of children with WS, articles, links and a listserv.
Canadian Down Syndrome Society
"The Canadian Down Syndrome Society (CDSS) is a vital resource linking parents and professionals. Comprehensive and current information on medical, educational and social issues is available through this national, non-profit organization." This site offers information, support services, current events, message boards, and links.
Center for the Study of Autism
"The Center for the Study of Autism (CSA) is located in the Salem/Portland, Oregon area. The Center provides information about autism to parents and professionals, and conducts research on the efficacy of various therapeutic interventions." This site offers a documented, in-depth overview of autism, as well as related disorders, issues (puberty, autistic savant, self-injurious behaviour, theory of the mind, etc.), interventions (food allergies, medication, sensory integration, etc.), information for siblings, interviews with medical professionals, and other information.
Cerebral Palsy FAQ
When a child is diagnosed with cerebral palsy (CP), parents have many questions about what caused the CP, how cerebral palsy will affect their child's future, and what treatments and therapies will work best to help their child attain maximum muscle function and have a vibrant future. Children who have cerebral palsy have difficulty coordinating muscles, and they may experience symptoms such as stiff muscles, exaggerated reflexes, walking with one foot dragging, walking on tip toes, walking in a crouched position, unsteadiness, and muscle tone that may be too tight or too floppy. Listed in this site are some resources for families affected by cerebral palsy.
Cerebral Palsy: A Guide For Care
This site addresses general questions (such as what CP is, early signs, how it is classified), therapy questions (such as TES, hippotherapy, cell therapy, the ketogenic diet, etc.), orthopedic questions (such as botox, phenol blocks, SDR, hip muscle releases, etc.), as well as problems associated with CP.
Charcot-Marie-Tooth Association
This site offers basic information about this condition (cause, treatment, diagnosis, etc.), as well as medical alerts (what drugs can be harmful to the CMT patient). There is information on the Association, publications, events and resources. One notable support feature on this site is the sizable discussion forum.
Charcot-Marie-Tooth International UK
CMT International UK is a support group for people affected by Charcot-Marie-Tooth Disease (CMT) and their families and care-givers. This site provides some basic general information on the nature of CMT, a detailed pamphlet of tips to help cope with CMT, and an introduction to CMT suitable for young children. This site also includes a list of drugs that may cause side effects if administered to people with CMT.
Children’s Brain Tumor Foundation
"Knowledge is critical for families and patients facing the challenge of a brain tumor. Our website provides an array of information and resources to assist you in accessing expert care to ensure quality of life for the child in your life with a brain or spinal cord tumor." Using easily understood language, this site deals with basic facts about the brain and spinal cord, the hospital stay, going home, school issues, and getting help.
CMTnet
"CMTnet is a repository of information for research and treatment of Charcot-Marie-Tooth (CMT)", and offers information for both the medical and non-medical communities. This site offers some detailed information on the history of this condition. This site also includes online documents, available newsletters, disability information, as well as links to support organizations.
Cure HD Foundation
A well organized and very informative web-site is posted at this address and was founded by Robert Bishop, a father of 5 children and whose wife has been diagnosed with Huntington’s Disease. Robert has made all of the information available on this site a point-and-click away from all else. Some of the links include news and events, contact information, HD research, and The HD Nightmare - which tells of Robert’s personal experience as well as others’ experiences.
Dana BrainWeb
The Dana BrainWeb is "an independent non-profit organization of more than 190 pre-eminent neuroscientists, including 7 Nobel Laureates, [which] recommends the Internet sites reviewed below as helpful resources for people concerned about brain diseases and disorders." This site offers links arranged into a number of broad categories, including Alzheimer’s disease, autism, brain tumors, cerebral palsy, epilepsy, headache, Huntington’s disease, multiple sclerosis, chronic pain, Parkinson’s disease, sleep disorders, stroke and Tourette syndrome.
Doctor’s Guide to Migraine Information and Resources
This site offers "the latest medical news and information for patients or friends/parents of patients diagnosed with migraine and migraine-related disorders." This site includes a large amount of medical news and alerts, as well as migraine information (such as diagnosis, cause, treatment, management, etc.) discussion groups and newsgroups, and links to related sites.
Doctor’s Guide to Multiple Sclerosis Information and Resources
This site offers "the latest medical news and information for patients or friends/parents of patients diagnosed with Multiple Sclerosis." There is information regarding multiple sclerosis in terms of causes, treatments and medication; there is also a variety of medical news and alerts, discussion groups and newsgroups, and links to other related sites.
Down Syndrome
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
This site also showcases contributions and resources from professionals and parents.
Dr. Koop’s Community
At Dr. Koop.com, you’ll find top medical stories from around the world as well as featured selections such as skin care, alternative medicine, and weight loss, and a number of monitored chat rooms. With specific chat topics being addressed at specific times throughout the day, you can’t go wrong with this site if you’re looking for easy conversation to help you through tough times, or just looking to put your mind at ease.
Dystonia Dialogue
This site, sponsored by the Dystonia Medical Research Foundation (an organization from Vancouver, British Columbia), aims to "provide information about dystonia and to direct interested persons to other resources." The excellent information on this site deals with the symptoms of specific types of dystonia, as well as brain tissue donation issues and research. There are a number of support groups linked to this site, as well as links to related pages. There is also information in French and Spanish.
Dystonia Information for Patients
This site offers "information about the primary features of dystonia, its classification, possible causes, and treatment options. This site also includes a built-in glossary of dystonia terms as well as a Frequently Asked Questions (FAQ) area." This site also includes a web chat feature.
Epilepsy Canada
Epilepsy Canada is the only national non-profit organization "whose mission is to promote and support research into all aspects of epilepsy, and to create awareness and understanding about epilepsy through educational programs." This site offers valuable information on basic epilepsy facts (types of seizures, epidemiology), research, coping with epilepsy (social issues, recreation and safety tips), diagnosis and treatment. There is also an easy-to-understand children’s guide to epilepsy.
Epilepsy Education Association – Online Publications
The Epilepsy Education Association, Inc. is a non-profit corporation that is dedicated to promoting education about epilepsy. This site features five informational brochures which focus on the following topics: general information about epilepsy, drug therapy for epilepsy, changes in lifestyle due to epilepsy, epilepsy and pregnancy, and surgical treatment for epilepsy. The information in these brochures is presented clearly and concisely.
Epilepsy Foundation
The Epilepsy Foundation is a national organization "that works for people affected by seizures through research, education, advocacy and service." In addition to information on the Foundation’s programs, services, and advocacy initiatives, this site provides some important information and education on epilepsy – with statistics, FAQ’s, first aid, employment information, effects on women, and more. This site also features a kids’ club, with games, chat rooms and news geared towards children.
Epilepsy in Young Children
This site is intended as a support platform for parents and other caregivers of children with epilepsy. The main portion of this site consists of over 800 current stories of individual children. One can search for stories in different ways: by child name, by diagnosis, by treatment, or by age. This site also features email groups and related links.
Epilepsy Ontario
This site was developed "to provide easy access to all the basic materials and current information about epilepsy and related issues needed by our chapter personnel and the people they serve in a fast, reliable and cost-effective medium." This site offers first aid tips, information on seizure types and medications, as well as a list of FAQ’s focusing on depression, driving, employment, human rights, diet, recreation, seniors, sex, and sudden unexplained death in epilepsy patients.
Epilepsy Resource Center
This page is from HealingWell.com, an online health resource guide with medical news, newsgroups and message boards, disease-related websites, medical directories and search engines for patients diagnosed with disabling conditions, or chronic illnesses. This page on epilepsy offers a large amount of links, specific epilepsy and medical sites, message boards and web rings.
Epilepsy – from MedlinePlus
This page consists of extensive lists of links related to epilepsy, covering the following topics: specific conditions/aspects, diagnosis, treatment, disease management, clinical trials, basic science/research, epilepsy in women and children, statistics, organizations, law and policy. Some of these documents are also available in Spanish.
Facial Neuralgia Resources
"Facial Neuralgia Resources is a patient-to-patient resource for victims of face pain caused by disorders of the cranial nerves." This site, which deals with Trigeminal Neuralgia, Atypical Trigeminal Neuralgia, Atypical Facial Pain, and Anesthesia Dolorosa, provides information on treatment, coping skills and research. This site also features a large support section including support groups, a newsletter, archives, a forum, chat rooms and more.
Fibromyalgia and Chronic Fatigue Syndrome Center
This Colorado Health Site offers definitions, facts and statistics on fibromyalgia, as well as information on medication, and new treatment developments. This site provides a list of patient and family support groups and services, and also a newsletter with valuable information for Fibromyalgia patients. There is a forum and a library of articles, books, videos and links.
Fibromyalgia Fact Sheet
This fact sheet, from the American College of Rheumatology, offers some basic information on fibromyalgia in terms of cause, health impact, diagnosis, treatment, and the rheumatologist’s role in treating this condition.
General Health Encyclopedia: Epilepsy
This Health Central site offers some valuable information on epilepsy, including alternative names, causes, incidence, risk factors, prevention, symptoms, signs, tests, treatment, prognosis, and complications.
Heading Off Migraine Pain
This page, from the U.S. Food and Drug Administration, deals largely with migraine treatment through medication (both over-the-counter and prescription), but also addresses individual migraine triggers, and stress. This page includes a chart which helps to determine which kind of headache one experiences – migraine, tension-type, or cluster. There is also a listing of headache / migraine related resources.
Huntington’s Disease Information
The Huntington’s Disease Information web-page was created by a librarian working at the University of Chicago. This site includes helpful and informative information on HD as well as very personal stories and poems written by caregivers or people with HD. It also includes lists of articles, audio-visual materials, books, electronic resources, pamphlets, plays, and theses from 1990 on relating to Huntington's Disease.
Huntington’s Disease Society of America
Whether you have been touched by Huntington’s Disease or just want to learn more about it, this web-site offers the latest in news and information all at the click of a button. The Huntington’s Disease Society of America (HDSA) offers unique features on their site including "Ask the Doctor", "Profile of the Month", and "HDSA’s Coalition for the Cure", making sure that you’ll find helpful information here.
Huntington’s Helpful Links
As quoted from the web-site, "These pages are offered as a one stop Huntington's Disease link page for individuals seeking information about the disease and it's many faces." With links leading to professional sites with factual, medical information, as well as links to sites created by individuals telling personal stories, this is a great site to visit when searching for any and all information on HD.
Information on Human Neurological Diseases
This page, from the Neurosciences on the Internet site, provides comprehensive information (in the form of lists of links) on a wide variety of human neurological diseases, including affective disorders, brain tumors, cerebral palsy, dementia, Huntington’s disease, learning disabilities, muscular dystrophy, phobias, sleep disorders, Tay-Sachs disease, and trauma.
Information on Human Neurological Diseases – Epilepsy and Seizures
This site offers a list of links on epilepsy and seizures, with information ranging from general background facts and FAQ’s to specific data on epilepsy related to drug treatment, pregnancy, driving, employment, surgery, ketogenic diet, epilepsy in children, and epilepsy in women.
International MS Support Foundation
"The IMSSF was founded to improve the understanding of multiple sclerosis through education and to promote the reduction of isolation by providing a support network for patients, their families, friends and physicians." This excellent support and information site includes an online newsletter, physician-patient interaction, disability equipment routing, employment opportunities for shut-ins, a bulletin board, chat area and listserv, and a pen-pal program for children, teens, and young adults.
James S. Huggins' Refrigerator Door: Multiple Sclerosis Pages
This page gives some general information about MS (what it is, who gets it, ideas on what causes it, symptoms, and treatment) as well as links to organizations, commercial journals, general medical sites and resources, and personal sites which deal with MS. This page also provides annotated links to a vast amount of MS related sites.
Living With Myasthenia
"The purpose of this website is to connect myasthenics with information and most
importantly with each other. Too many myasthenics have lived alone with their
myasthenia gravis for 20 - 30 - 40 years or more." The function of this site is support, offering online e-mail support, personal experiences, and daily living with myasthenia.
Lymphoma Association
"The Lymphoma Association provides emotional support and information on a range of issues to anyone with lymphatic cancer and to their families, carers and friends." This site offers a variety of publications such as "Questions to Ask Your Doctor", "General Information About Steroids", "Relaxation and Breathing Exercises", and "A Young Person’s Guide to Lymphoma". This site also offers abridged versions of the Association’s newsletters, and links to relevant sites.
Lymphoma Research Foundation
This site helps patients learn about the different types of lymphoma, treatment options, causes and statistics. There is also information on clinical trials, research, as well as resources such as links, email discussion groups and newsgroups. There are a number of patient education programs offered, including a newsletter, forum and helpline. This site also offers support programs and a message board.
Lymphoma Research Foundation Canada
"The focus of the LRFC/FCRL is on lymphoma issues and treatment in Canada." This site discusses the lymphomas in terms of their incidence, classification, causes, diagnosis, and treatment. The site includes some on-line publications on lymphoma-related topics, as well as other non-Internet resources such as patient and family support. This site also provides research and fundraising information.
Michigan Headache Treatment Network
"These pages exist to give the headache sufferer some important insights, through the eyes of neurologists and nurses who treat headache disorders. Some of us are also headache sufferers. Our purpose is to keep you up to date on developments in the world of headaches and provide guidance to the headache sufferer in these times of unbalanced media coverage and marketing blitz."
Michigan Institute for Neurological Disorders – Information Page
This page offers some basic general information on the following neurological disorders: Alzheimer’s disease, anxiety disorders, carpal tunnel syndrome, headache, insomnia, multiple sclerosis, migraine, pain, stroke, and transient ischemic attack (TIA). There is also useful information on helping people with depression, following a healthy diet, and being careful when lifting heavy objects.
Migraine Headaches: One Type of Vascular Headache
This page, from the National Institute of Neurological Disorders and Stroke (NINDS), deals with the symptoms of migraine, the migraine process, migraines as affecting women, triggers of migraine headache, other forms of migraine, and treatment, (drug therapy, biofeedback and relaxation training, and diet). The information on this site is presented in clear, concise language. . Simply click on "Health Information" on the left side of the website, locate Migraine, and you're on your way.
Migraines: Taking Control of Your Pain
This article, originally published in Mayo Clinic Women's HealthSource, provides very concise, to-the-point information about migraines. This information deals with causes of migraines, triggers (hormone fluctuations, diet, stress, etc.), how to stop migraine pain through medication, non-drug therapies, and ways to prevent migraine pain.
MS Talk
"MSTalk is here to offer a platform for people with MS and those near to them an opportunity to gather information and share ideas and concerns." Although there is some helpful information on this site (e.g. what MS is, what happens during at attack, symptoms, diagnosis, etc.), the focus is on support, including discussion, chat rooms, message boards, and a mailing list.
Multiple Sclerosis Association of America
"The Multiple Sclerosis Association of America is dedicated to enhancing the quality of life of people coping with multiple sclerosis — those with MS, their families, their friends." This site illustrates the programs and services of the MSAA (such as a lending library, doctors and clinics available, housing, etc.), explains about MS through a number of relevant pamphlets and news releases, and offers chat rooms and support groups.
Multiple Sclerosis Society of Canada
The MS Society of Canada aims to "be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life." The site includes FAQ’s, sections on individual and family services, research and medical updates, national publications, as well as related links, mailing lists, and newsgroups.
Muscular Dystrophy Association
The Muscular Dystrophy Association is an excellent "source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families." This site includes a searchable database of publications, information on current research developments, and ways to help fight MD by donations or volunteering.
Muscular Dystrophy Association of Canada
The MDAC "provides information, vital services, and hope to tens of thousands of Canadians living with neuromuscular disorders." This site offers informational brochures, information on regional chapters and contact information, and access to Connections, the Muscular Dystrophy of Canada's seasonal newsletter.
Myasthenia Gravis Foundation of America
This site offers pamphlets on general information, nutrition, safety and medication and treatment. In addition to patient services (although these are for the most part directed toward American patients) and research information, there are extensive lists of links on this site, including patient support sites.
National Brain Tumor Foundation
The National Brain Tumor Foundation has "developed this web site for you to help answer the many questions you might have about brain tumor diagnosis, treatments and how to cope. Throughout this web site you will find responses to frequently asked questions about brain tumors, information about brain tumor types, background on brain tumor treatments and rehabilitation and clinical trials."
National Headache Foundation
The NHF Headache Information Center offers topic sheets for specific headache conditions, a list of educational materials for purchase, information about headache support groups, sample articles from the NHF Head Lines (the award-winning bi-monthly newsletter), plus general information about the National Headache Foundation.
National Institute of Neurological Disorders and Stroke (NINDS)
This excellent site provides a wealth of information on a wide range of neurological disorders. Divided into sections for patients, clinicians, and scientists, this site also provides information on research and new treatment studies, as well as links to other health organizations.
National Parkinson Foundation
The National Parkinson Foundation Inc. (NPF) has a fully inter-active web-site allowing the user to find out facts about Parkinson Disease, the newest clinical studies, events, and news from around the world as posted on a near daily basis. This site also includes an excellent page for links to other sites on the web.
National Sleep Foundation
"The National Sleep Foundation is a nonprofit organization that promotes public understanding of sleep and sleep disorders and supports sleep-related education, research and advocacy to improve public health and safety." The Foundation has information on different types of sleep disorders such as insomnia, sleep apnea, narcolepsy, restless legs, periodic limb movements, parasomnias, drowsy driving, and jet lag. The site includes publications, activities, press archives and related links.
Neuroland – Patient Info
This page consists basically of a list of links, separated into individual categories by the particular disease. There is some general information for the patient and family, and specific information on the following diseases: brain and cranial nerve disorders, and spine, nerve and muscle disorders. This includes Parkinson’s disease, multiple sclerosis, headache and migraine, brain tumors, spinal injury and epilepsy.
Neurological Disorder Resources
This page provides Internet resources for the following neurological disorders: Alzheimer’s disease, aphasia, Bell’s palsy, Creutzfeldt-Jakob disease, epilepsy, Huntington’s disease, neuromuscular disorders, neuro-oncology, neuro-immunology, neuro-ontology, pain, Parkinson’s disease, pediatric neurology, phobias, sleep disorders, and Tourette syndrome. This site also offers fact sheets from the American Academy of Neurology.
Parkinson’s Action Network
As can be read in their Mission Statement, Parkinson’s Action Network is committed to promoting "…a level of research support sufficient to produce an effective treatment and cure as soon as is humanly possible." With a detailed explanation of the Parkinson’s Action Network’s goals and accomplishments, as well as facts about Parkinson Disease, and a number of links, this site helps those diagnosed as well as those in search of knowledge a cornucopia of information.
Parkinson’s Disease Foundation
The Parkinson’s Disease Foundation Inc. offers easily accessible information on the current research underway, support for those diagnosed with Parkinson’s, and information for those in need of it. There is also a convenient News Bulletin section with news posted from "Around the Parkinson’s Community".
Robert’s Neurology Listings
These listings are divided into sites for physicians and sites for the general public in order to make browsing more directed and productive. The general public sites are grouped into the following diseases: aging/Alzheimer's disease, autism, autonomic disease, Charcot-Marie-Tooth, dystonia, epilepsy, pediatric epilepsy, Fibromyalgia, headache/pain management, Huntington's disease, hydrocephalus, multiple sclerosis, myasthenia gravis, Parkinson's disease, spasmodic torticollis, stroke, and trigeminal neuralgia.
Sleep/Wake Disorders Canada
This web page explains the importance of quality of life, and how this relates to sleep/wake disorders. Other features on this site are as follows: directory, brochures international classification of sleep disorders, sleep centers, library, events and links to other sites.
SleepNet
This web site has general information on sleep disorders, and different types of sleep disorders (such as apnea, insomnia, narcolepsy, restless legs, and others). There is information on treatment, effects, and causes of sleep disorders. Also included are discussion forums, and sleeping disorder links
Teaching Strategies for Students with Disabilities
The National Dissemination Center for Children with Disabilities (NICHCY) has provided information and resources to the nation on disabilities in children and youth for many decades. On September 30, 2013, however, our funding from the Office of Special Education Programs at the U.S. Department of Education ended.
Tension Headache
In basic terms, this site explains what tension headaches are, what causes them, common symptoms, treatment (based on what the sufferer can do, and what the health care provider can do), prevention, common myths, and resources.
The American Parkinson Disease Association
The American Parkinson Disease Association (APDA) has set out a goal of "…promoting a better quality of life for the Parkinson’s community." Once arriving at their homepage, you will be offered information specifically about Parkinson’s Disease, and the projects and events under-way for the funding of the APDA.
The Brain Tumor Society
The Brain Tumor Society is "committed to a cure through research, education and support." This award-winning site offers basic information about brain tumors, resources for patients and families, frequently asked questions, information for health care providers, and web resources. The information on this site is detailed, comprehensive and helpful.
The Canadian Health Network
Available in both English and French, the Canadian Health Network offers a cornucopia of information provided by over 500 trusted organizations from across Canada. With a detailed explanation of different searches available for the user, finding information is quick and easy to follow. This site also contains over 200 Frequently Asked Questions (F.A.Q.’s) which are very helpful for day-to-day living.
The Canadian Movement Disorder Group
"This site is a starting point for people with movement disorders and their care-givers to access information about different movement disorders. It also provides information about national and regional resources." This site provides very concise information about tremor, dystonia, Tourette Syndrome, Parkinson’s Disease, Huntington’s Disease, ataxias, and more. This site also offers the following: medication information, provincial patient resources, caregiver links, national support groups, treatment options, and information on new and upcoming research.
The Dystonias: Fact Sheet
This page is a publication of the National Institute of Neurological Disorders and Stroke. The concise information provided here covers the topics of symptoms, classification of dystonias, treatment, what scientists know about dystonias, research, and other resources.
The EpiCentre
"The EpiCentre has been established for people with epilepsy and their families. Its aim is to provide information about epilepsy and its treatment." This site gives an explanatory overview of epilepsy, with information on causes, varieties and types of seizures, and treatment methods. There is also a section explaining what may bring on a seizure.
The Healing Exchange Brain Trust
The Healing Exchange is "a virtual space where people can share information and support concerning brain disorders." This site is a resource and a learning place for the general public as well as medical professionals. The mission of this nonprofit organization is "to make the experience of neurological disorders (especially brain tumors) less horrific by encouraging and enabling geographically dispersed people to communicate." This site is the home of the BRAINTMR mailing list.
The Huntington Society of Canada
The Huntington’s Society of Canada (HSC) offers a web page available in both the English and French languages. Located in Kitchener, Ontario, the HSC has created a web-site with many easily accessible items including resource materials, information on fundraising activities, press releases, Huntington’s Disease (HD) itself, and living with HD.
The Migraine Association of Canada
The Migraine Association of Canada is "dedicated to empowering migraine sufferers to obtain relief from their disorder by providing support, information and education." This site includes basic information about migraines, complications such as stroke or infections, a questionnaire to assess individual migraine suffering, and a section for kids.
The Myelin Project
This site offers fascinating and encouraging information about what is being done to discover a cure for multiple sclerosis and other demyelinating disorders.
The Ontario Federation for Cerebral Palsy
The Ontario Federation for Cerebral Palsy (OFCP) is a non profit charitable organization dedicated to supporting people with cerebral palsy (CP) in Ontario. It is an organization committed to supporting independence, inclusion, choice and full integration of all persons with cerebral palsy.
The Parkinson’s Institute
Being an independent, not-for-profit organization, The Parkinson’s Institute concentrates all its efforts solely on movement disorders. The scientific staff and laboratories have grown apace and today the Institute occupies a 40,000 square foot building in the heart of Silicon Valley, thus giving the Institute ample room to conduct up-to-the-minute studies and research.
The Sleep Well
"The Sleep Well was created as a reservoir of information on sleep and sleep disorders." This site explores various aspects of sleep such as dreaming and snoring, as well as sleep disorders, and it provides information on how to sleep well, and sleeping aids. This site offers a journal, books, respiratory equipment, and links to other sites.
The Teacher's Success Guide for Special Needs Students
Communication techniques with parents and your student.
Tourette Syndrome "Plus"
"On this site you will find up-to-date, comprehensive information on a number of childhood-onset conditions, including diagnosis, treatment, parenting, and school-related issues and tips. Learn the signs and symptoms of various conditions and what you can do to help. Much of the material on this site will also apply to adults with these conditions."
Tourette Syndrome Association, Inc.
This association is "dedicated to providing up-to-date, accurate information about Tourette Syndrome." The site provides "the most comprehensive and medically reviewed published material on this disorder", including scientific publications, information on treatments and diagnosis, health insurance, and TS in the media. This site also includes support functions, such as information directed towards children, the stories of famous people with TS, and more.
Tourette Syndrome Foundation of Canada
"The Tourette Syndrome Foundation of Canada is a national voluntary organization dedicated to helping individuals with Tourette Syndrome and their families by: gathering and distributing information, promoting local self-help and professional services and promoting research." This bilingual site offers a Q&A section which explains TS, links to related sites, a list of TSFC affiliates, and a Kids Korner with pictures, letters and personal stories.
Trigeminal Neuralgia Association
This page explains the nature of this condition (which is universally considered to be the most painful affliction known to medical practice) with brief information on symptoms and treatment. This site offers news, a question and answer column, articles and papers, organizations and resources, as well as a support network.
Uno Mas! Down Syndrome Online
"People with Down syndrome have "One More" #21 Chromosome! This site exists to celebrate the uniqueness of people with Down syndrome, and to offer support to new and expectant parents. Our goal is to help all families to share experience, advice and support. Above all else, we want you to have a good time while you are visiting our site." This site includes stories, a photo album, chat rooms, a bulletin board, and some basic information on Down Syndrome.
What You Need to Know about Non-Hodgkin’s Lymphoma
These pages constitute a booklet from the National Cancer Institute. This booklet outlines Non-Hodgkin’s Lymphoma in terms of symptoms, diagnosis, staging and treatment. There is also information on clinical trials, side effects of treatment, nutrition for cancer patients, recovery, follow-up care, and support. This booklet includes a glossary with underlined medical terms.
Williams Syndrome Association
"The Williams Syndrome Association is dedicated to enriching the lives of individuals with characteristics of Williams syndrome." This detailed site provides much helpful information about Williams Syndrome: diagnosis, medical guidelines, common features, educational strategies, etc. This site also includes information on the Association’s many programs.
Williams Syndrome Foundation (UK)
This Foundation was formed "with the twin aims of research, and the help and support of families with affected children." This site offers brief information on the nature of this syndrome, including diagnosis, treatment and research information. However one of the most appealing features on this site is the list of guidelines. These guidelines, in the form of pamphlets, are detailed and informative, and deal with parent-child relationships, teacher-student relationships, and adults with Williams Syndrome facing employers / professionals.
Wilson’s Disease Association International
This site provides helpful, in-depth information about Wilson’s Disease, as well as a number of relevant online, downloadable, and newsletter articles. This information addresses the questions of how the disease is diagnosed, if it is an inherited disorder, and how Wilson’s Disease is being treated. This site offers an e-mail discussion group, and links. Information is also available in Italian, Dutch, Portuguese, German and Spanish.
http://www.wilsonsdisease.org/index.htm
Wilson’s Disease UK
"The organization aims to provide informative articles about the nature of the disease, articles written by patients, families and friends about their experiences of the disease, recent progress in treatment and much more, by way of a biannual newsletter." This site includes an Info Center with information on signs and symptoms, diagnosis, accumulation of copper, as well as helpful links. This site also provides a newsletter, and a mailing list.
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