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• Epilepsey (6)

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• Learning Disabilities (9)

• Mental Retardation (4)

• Multiple Sclerosis (7)

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• Orthopedic Conditions (6)

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• Parkinson's Disease (7)

• Prader-Willi Syndrome (4)

• Psychological Disorders (14)

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• Tourette Syndrome (5)

• Visual Impairments/Blind (18)

• Other Rare Disorders/Diseases/Conditions (29)

     Independent Life Resources attempts to bring you the most up-to-date CONDITION SPECIFIC links available. This directory was personally created to support persons with disabilities, senior citizens, and those with other health related needs. This is, however, not an endorsement of any of the programs, products, or services listed.

Michael S. True, ILR Publishing Editor

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American Epilepsy Society

Our Mission: The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy.

British Epilepsy Association (UK)

"We want to live in a society where everyone understands epilepsy and where attitudes are based on fact not fiction."

CURE Epilepsy

Citizens United for Research in Epilepsy (CURE) is a national, volunteer, grassroots effort dedicated to finding a cure for pediatric epilepsy and raising public awareness of the prevalence and devastation of this disease.

Epilepsy Foundation of America

The Epilepsy Foundation is a national, charitable organization, founded in 1968 as the Epilepsy Foundation of America. The only such organization wholly dedicated to the welfare of people with epilepsy, our mission is simple: to work for children and adults affected by seizures through research, education, advocacy and service.

(The) Epilepsy Project.

The Epilepsy Project was founded by three fathers of young children with epilepsy along with their children's doctor, a leading researcher and clinician in the field of epilepsy.

Fit And Well (UK)

With this website, we hope to provide you with details and information that can help you understand and cope with epilepsy... we aim to provide you with the knowledge that will enable you or your loved ones to still live life to the fullest.

Acoustic Neuromas: They can be detected and treated early.

Information from Med Help International.

Acoustic Neuroma Association (ANA)

Information about the association, local support groups, frequently asked questions about acoustic neuromas, acoustic neuroma detection, treatments for acoustic neuromas, a glossary of terms relevant to acoustic neuromas, and articles from ANA Notes.

Alexander Graham Bell Org

The Alexander Graham Bell Association for the Deaf and Hard of Hearing is an international membership organization and resource center on hearing loss and spoken language approaches and related issues.

All Deaf

Most popular forum for the deaf and hard of hearing. Come share with us your thoughts and opinions on deaf related topics and issues.

A-Z to Deafblindness

This site is here to help Blind or deaf people, and especially deafblind people, and those who provide specialized services for those who are deafblind. A-Z to Deafblindness is also here, to make people more aware about deafblindness.

Deafblind

My name is James Gallagher and I am deafblind myself. This site is here to try and offer some help to Blind or deaf people, and especially deafblind people, and those who provide specialised services for those who are deafblind. A-Z to Deafblindness is also here, to make people more aware about deafblindness.

HandSpeak

Welcome to the HandSpeak™... an approach to the imagery language and communication. A sign-language dictionary online! Features "mini" hand sign videos.

Otology Online

The home page for a surgical subspecialty which is dedicated to the diagnosis and treatment of diseases of the ears, hearing, and balance.

World Federation of the Deaf/Blind

The World Federation of the Deaf/Blind hosts links to the New DeafBlind Zealand, the Australian DeafBlind Council, the European Blind Union, and A-Z to Deafblindness.

American Heart Association

The American Heart Association has recipes, tips and tools that will help you stay heart healthy...

American Stroke Association

The American Heart Association is fighting back against stroke. Since the American Heart Association was reorganized into a voluntary health organization more than 50 years ago, it has funded research to learn about preventing and treating heart disease and stroke. It has also developed programs to educate the public about these deadly diseases.

Heart and Stroke Foundation (CA)

The Heart and Stroke Foundation is a national voluntary non-profit organization whose mission is to improve the health of Canadians by preventing and reducing disability and death from heart disease and stroke through research, health promotion and advocacy.

Hope Heart Institute

Dedicated to reducing death and disability caused by cardiovascular disease, America's #1 killer, through research and education to advance treatments, prevention and improve patient care.

(The) Research Center for Stroke and Heart Disease

The Research Center for Stroke and Heart Disease is a non-profit organization dedicated to preventing stroke and heart disease. We believe the impact of these diseases can be substantially reduced if current knowledge is effectively translated into action by the public and health care professionals.

Strokedoctor

The Strokedoctor: David A. Steenblock, M.S., D.O. Providing a Comprehensive Neuro-Rehab Program utilizing Hyperbaric Oxygen, Pulsed Magnetic Therapy, Acupuncture, Biofeedback/Neuro-Biofeedback, Physical Therapy, External Counterpulsation, and Nutritional/Metabolic Therapies.

About: AIDS

Each site in our unique network is run by a professional Guide who is carefully screened and trained by About. Guides build a comprehensive environment around each of their specific topics, including the best new content, relevant links, How-To's, Forums, and answers to just about any question.

AIDS Article

Definition and basic facts in an article format.

AIDS Committee of Toronto (CA)

AIDS Committee of Toronto is an Online Self-Help Forum for people with HIV/AIDS, their friends, family, partners and caregivers.

AIDS Community Research Initiative of America

National HIV/AIDS medical research center in search of more effective treatments and a cure. Empowering women and people of color to make informed medical decsions.

Aidsmeds.com

AIDSmeds.com is dedicated to providing people living with HIV the necessary information they need to make empowered treatment decisions. The founder and writers of this web site are all living with HIV, and we know first hand the challenges of learning how to fight this virus. By offering complete, but not complicated, up-to-date info, AIDSmeds.com seeks to help those that are both new and old to this challenge, and to remain a powerful resource for years to come.

AVERT (UK)

AVERT is a leading UK based AIDS Education and Medical Research charity. We are responsible for a wide range of education and medical research work with the overall aim of:preventing people from becoming infected with HIV, improving the quality of life of those already infected, through medical research working to develop a cure for AIDS.

Better Existence with HIV

Better Existence with HIV is a private, not-for-profit AIDS service organization in northern Cook County, Illinois. Founded in 1989 to address the alarming growth of HIV in Evanston, Chicago's north side, and the northern suburbs, today BEHIV is a regional service provider with 21 caring and professional staff and 230 dedicated volunteers.

HIV Insite

HIV InSite is a Web site developed by the University of California San Francisco (UCSF), one of the world's leading health sciences institutions. Within UCSF, HIV InSite is a collaborative project of the San Francisco Veterans Affairs Medical Center, the Positive Health Program at San Francisco General Hospital and the Center for AIDS Prevention Studies, components of the University's AIDS Research Institute.

ADD Resources

Attention Deficit Disorder Resources is a non-profit organization in the Puget Sound area run mostly by volunteers who are adults with ADD. We are dedicated to supporting, educating and serving as a resources for others with Attention Deficit Disorder.

Coping Organization (Education isssues)

Tools for Getting Parents Involved in the Exceptional Education Process - Section 12. Explore this site for many well organized and useful informational resources for dealing with the day-to-day issues of parenting and caring for persons with disabilities.

Dyslexia site

Join us as we explore the positive talents that give rise to dyslexia, and share our knowledge about the best ways for dyslexic people to learn.

KidSource

Resources and information for parents - includes Learning Disability articles.

Learning Disabilities Association of America

Welcome! The Learning Disabilities Association of America is a national, non-profit organization. Our purpose is to advance the education and general welfare of children and adults of normal or potentially normal intelligence who manifest disabilities of a perceptual, conceptual, or coordinative nature.

Learning Disabilities Association of California

LDA-CA is a 501(c)(3) non-profit volunteer organization of parents, professionals, and adults with learning disabilities. Its purpose is to promote and support the education and general welfare of children and adults of potentially normal intelligence who manifest learning, perceptual, and/or behavioral handicaps.

Learning Disabilities Online Organization

The interactive guide to learning disabilities for parents, teachers, and children.

National Center for Learning Disabilities

The mission of the National Center for Learning Disabilities (NCLD) is to increase opportunities for all individuals with learning disabilities to achieve their potential. NCLD accomplishes its mission by increasing public awareness and understanding of learning disabilities, conducting educational programs and services that promote research-based knowledge, and providing national leadership in shaping public policy. We provide solutions that help people with LD participate fully in society.

Study Pro - Links

The 'all about learning' website. Primary focus - dyslexia resources.

The American Association on Mental Retardation

The purposes of the AAMR are to 1) facilitate cooperation among those engaged in services, training, and research in the area of mental retardation; 2) encourage research and disseminateinformation in the field; 3) encourage personnel development and student interest in the field; 4) support high standards of services, training, and research; 5) promote the welfare of the mentally retarded and of those who work with them; 6) review and influence relevant public policies; and 7) promote preventive measures which can be initiated on behalf of mentally retarded persons.

Association for the Help of Retarded Children

The aim of AHRC's work has been to offer disabled individuals day to day living that is as rich, absorbing and worthwhile as possible, with an emphasis on helping clients live up to their maximum potential in the community (New York, NY).

ARC - Association of Retarded Citizens

The national organization of and for people with mental retardation and related developmental disabilities and their families. Links to Disability-Related Resources

The NADD (National Association for Dually Diagnosed

NADD is recognized as the world's leading organization in providing educational services, training materials and conferences. NADD has been influential in the development of appropriate community based policies, programs and opportunities in addressing the mental health needs of persons with mental retardation.

Living with Disability

Living with Disability, an e-book, is sold in digital format only. Learn how to cope quickly, efficiently and effectively with a disabling disease. Focus on multiple sclerosis.

MS Society (UK)

Across the UK, from the Shetlands to the Channel Islands, information and support are available to anyone affected by MS from our network of over 360 local branches.

MS Trust (UK)

We are a leading independent UK charity for people with multiple sclerosis, their families and friends, and for all health professionals.

MS Resource Centre (UK)

In some circumstances our support might just take the form of being someone to talk to and share concerns or fears. It might be the provision of information at the time or by providing leaflets or books that could help. We will also refer you to other organisations if they are better suited to provide the support needed.

Multiple Sclerosis National Research Institute (Torrey Pines Institute for Molecular Studies)

Conducts research for development of vaccines and other therapies to halt progression of multiple sclerosis and other human diseases. Help us find cures!

National Multiple Sclerosis Society

Access the latest information About MS diagnosis and Treatments, resources for Living with MS, and Society-funded Research efforts. Tap into our Library and Educational Programs.

Sisters Speaking Out

Motivational speakers, fundraisers, dealing with Multiple Sclerosis and other personal life changing challenges, these two remarkable women make up a true dynamic duo.

World of MS

The Federation seeks to work in world-wide partnership with Member Societies and the international research community to eliminate multiple sclerosis and its consequences, and to speak out globally on behalf of those affected by multiple sclerosis.

Muscular Dystrophy Association

The Muscular Dystrophy Association is a voluntary health agency — a dedicated partnership between scientists and concerned citizens aimed at conquering neuromuscular diseases that affect more than a million Americans.

Muscular Dystrophy Australia Inc. (AU)

Featuring resources and services. Based in Melbourne, Australia.

Muscular Dystrophy Campaign (UK)

The Muscular Dystrophy Campaign is the only UK charity focussing on all muscular dystrophies and allied disorders. We have pioneered the search for treatments and cures for over 40 years. We also provide practical, medical and emotional support for people affected by the conditions.

Muscular Dystrophy Family Foundation

The Muscular Dystrophy Family Foundation, Inc. provides services, resources, home medical equipment and adaptive devices to help people with muscular dystrophy and their family members live independent and productive lives.

NINDS Muscular Dystrophy Information Page

"The muscular dystrophies (MD) are a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles that control movement. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic..."

American Association of Orthopaedic Surgeons

Your online orthopaedic connection.

Dr.Mendbone.com

Pushing the envelope in Knee repair!

Dystonia Medical Research Foundation

The mission of the Dystonia Medical Research Foundation is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.

The Marrow Foundation

The foundation supports patient assistance, assists the recruitment of etchnically diverse volunteers for the National Registry of unrelated donors, and sponsors research on marrow transplantation.

Osteogenesis Imperfecta Foundation

Working to cure genetic disorder that causes bones to break easily (sometimes called "brittle bones"). Your contribution provides answers for families, funds research, educates doctors.

(The) Cleveland Clinic Pain Management Department

We treat each patient individually, using the latest equipment and various innovative procedures to diagnose pain and determine your care needs. We then assemble the appropriate interdisciplinary team of health care professionals who can best help you. Whatever the source of your pain, you can benefit from visiting the Pain Management Department.

Pain.com

A world of information on pain management.

Pain Foundation

An independent nonprofit organization serving people with pain through information, education and advocacy. Our mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

SpineUniverse

The World Leader in Back Pain Care. This website offers information on a variety of conditins and treatment alternatives. Many articles relate detailed information focused on chiropractic treatments.

The University of Southern California Pain Center

At the USC Pain Center, our goal is to provide unequaled patient care. We utilize the most advanced technology for our patient’s physical improvement, but we also work to strengthen our patient’s emotional ability to cope with the sometimes debilitating effects of pain in order that they may return to a fully productive life.

Dystonia Medical Research Foundation

The mission of the Dystonia Medical Research Foundation is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.

National Parkinson Foundation

The National Parkinson Foundation is the largest organization serving persons affected by Parkinson disease throughout the world. The Foundation supports research for a cure and programs dedicated to improving care and quality of life. NPF provides information, support, and education for persons with Parkinson, their families, and health care professionals.

NINDS Parkinson's Disease Information Page

The National Institute of Neurological Disorders and Stroke (NINDS) conducts and supports research on brain and nervous system disorders. Created by the U.S. Congress in 1950, NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH)

Parkinson's Disease

MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations.

Parkinson's Disease Foundation

The Parkinson's Disease Foundation, Inc. is a national, non-profit organization, chartered in the state of New York with offices in New York City and Chicago. The PDF is dedicated to supporting and promoting the highest-quality research world-wide into the cause(s) and cure of Parkinson's disease, and for better symptomatic treatments. This is accomplished via our various internationally-supported grant programs.

the Parkinson's Society of Ottawa-Carleton (CA)

Welcome to the Parkinson's Society of Ottawa-Carleton. If you or someone you know is suffering from Parkinson's disease, you have come to the right place because we are dedicated to improving your quality of life.

WE MOVE™

Welcome to the WE MOVE™ Web Site, the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web. Parkinson's Information page.

International Prader-Willi Syndrome Organisation

Welcome to the International Prader Willi Syndrome Organization (IPWSO) web site. Our Global Family of parents, friends, and professionals has formed a dedicated partnership worldwide.

Prader-Willi Syndrome

MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations.

Prader-Willi Syndrome Association (USA)

The Prader-Willi Syndrome Association was organized in the United States in 1975 to serve as an international vehicle of communication about Prader-Willi syndrome (PWS), a genetically based developmental disability.

Prader-Willi Syndrome Association (UK)

We are a registered charity, and the only organisation in the UK which is dedicated to supporting people with Prader-Willi syndrome (PWS),their families, carers, and the professionals who work with them.

American Association of Suicidology

Welcome to the website of the American Association of Suicidology, a nonprofit organization dedicated to the understanding and prevention of suicide. This site is designed as a resource for anyone concerned about suicide, including AAS members, suicide researchers, therapists, prevention specialists, survivors of suicide, and people who are themselves in crisis.

American Psychiatric Association

The American Psychiatric Association is a medical specialty society recognized world-wide. Its 40,500 U.S. and international physicians specialize in the diagnosis and treatment of mental and emotional illnesses and substance use disorders.

Anxiety Disorders

Anxiety disorders are a heterogeneous group of psychiatric disorders with no clear knowledge of their aetiology and pathogenesis. Early recognization of symptoms of anxiety disorder may help one to get rid of it to a great extent.

Anxiety Disorders Assoc. of America

ADAA promotes the prevention and cure of anxiety disorders and works to improve the lives of all people who suffer from them

National Alliance for the Mentally Ill

The National Alliance for the Mentally Ill (NAMI) is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders.

The NADD (National Association for Dually Diagnosed)

NADD is recognized as the world's leading organization in providing educational services, training materials and conferences. NADD has been influential in the development of appropriate community based policies, programs and opportunities in addressing the mental health needs of persons with mental retardation.

National Eating Disorders Association

Working to prevent, treat, and find a cure for anorexia, bulimia, and other eating disorders. Your gifts fund life-saving research, treatment referrals and education programs.

National Empowerment Center website

Recovery is real and this website is filled with practical information that will help you recover if you have been labled with a mental illness.

National Mental Health Association

NMHA is dedicated to promoting mental health, preventing mental disorders and achieving victory over mental illnesses through advocacy, education, research and service.

Nat'l Mental Health Consumers' Self Help Clearinghouse

Welcome to the National Mental Health Consumers' Self-Help Clearinghouse, a consumer-run national technical assistance center serving the mental health consumer movement. We help connect individuals to self-help and advocacy resources, and we offer expertise to self-help groups and other peer-run services for mental health consumers.

PeopleWho

People who experience mood swings, fear voices and visions...

Self Esteem Shop Online

Self Esteem Shop is your number one source for mental health resources. A therapist looking for the latest Eliana Gil book? A divorced parent looking for something to get you through the hard times? Self Esteem Shop has what you're looking for.

Substance Abuse and Mental Health Services Administration

SAMHSA is the Federal agency charged with improving the quality and availability of prevention, treatment, and rehabilitative services in order to reduce illness, death, disability, and cost to society resulting from substance abuse and mental illnesses.

SAVE - Suicide Awareness Voices of Education

DID YOU KNOW? Of the many millions of Americans who suffer from depression in any given year, 80% can be effectively treated, but only 30% seek help and of that number, slightly more than half are accurately diagnosed and receive appropriate treatment.

Suicide Prevention Action Network, Inc.

SPANUSA® is dedicated to the creation and implementation of effective National Suicide Prevention Strategies. SPANUSA® represents the grass roots people of America's local communities. This is accomplished by the political will created by the "Power of the People".

Association for Spina Bifida and Hydrocephalus (England)

Through a network of professional Advisers backed up by specialists in mobility, continence management, education and medical matters, ASBAH provides advice and practical support to people with these disabilities, their families and carers.

Management of Spina Bifida, Hydrocephalus and Shunts

An article by Spyros Sgouros, MD, FRCS(SN)(Glasg). "Hydrocephalus is the condition of excess cerebrospinal fluid (CSF) accumulation in the head that is caused by disturbance of formation, flow, or absorption. The term stems from the Greek, hydor (water) and cephali (head)."

Spina Bifida Association of America

The Mission of the Spina Bifida Association of America is to promote the prevention of spina bifida and to enhance the lives of all affected.

Spina Bifida and Hydrocephalus Association of Canada

SBHAC has been working on behalf of people with spina bifida and/or hydrocephalus and their families. The Association's purpose is simple - to make life better for those born with spina bifida and/or hydrocephalus and for those not yet born.

NINDS Tourette Syndrome Information Page

The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.

Tourette - Syndrome.Com

Welcome to Tourette-Syndrome.com - the Internet's first online community devoted to children and adults with Tourette Syndrome (TS) disorder and their families, friends, teachers and medical professionals. TS is an inherited neurological disorder characterized by involuntary motor and/or verbal tics and sometimes accompanied by other disorders (e.g., ADHD and OCD.).

Tourette Syndrome Association, Inc.

Founded in 1972 in Bayside New York, TSA is the only national voluntary non-profit membership organization in this field. Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome.

Tourette Syndrome Association (UK)

Welcome to the Official Web Site of the Tourette Syndrome (UK) Association, a Registered Charity dedicated to: Providing Support, Educating, Informing and Campaigning, Promoting Medical Research on behalf of all those affected by TS.

Tourette Syndrome "PLUS"

This site represents more than just "book knowledge" or clinical experience, however. It also incorporates my experiences as a family member and pro bono advocate for the Tourette's Syndrome community. As the parent of two young adults with TS+ and as the spouse of a man with TS+, I know some of the pain and challenges that family members face on a daily basis.

Achromatopsia

Information from the Online Mendelian Inheritance in Man (OMIM)

Achromatopsia Network Homepage

More information about Achromatopsia

American Printing House for the Blind Homepage

To promote the independence of blind and visually impaired persons by providing special media, tools, and materials needed for education and life.

A-Z to Deafblindness

This site is here to help Blind or deaf people, and especially deafblind people, and those who provide specialized services for those who are deafblind. A-Z to Deafblindness is also here, to make people more aware about deafblindness.

Blind Links

A directory of Internet resources for those with Visual impairments.

Blindness Resources Center - Eye Diseases and Conditions

Links to some useful condition-specific resources relating to visual impairments.

Blindness - Written for Kids

This website has been designed to inform kids about blindness. We hope you like it and learn more about being blind. This site covers several different topics related to blindness. Most pages also have links to other websites on blindness.

Blind World

Welcome to Blind World, where the world keeps up-to-date with the latest news and goings-on in the blindness and visually impaired communities. Here you will find a variety of interesting, informative and entertaining articles, pertaining specifically to the world of the blind and visually impaired.

Colour Vision Defects

This is a page of info, designed to be a huge assignment for my course, so it may not be to everyone's taste. But if you're in here looking for info about all types of colour vision defects, hopefully you'll find what you're looking for!

Deafblind

My name is James Gallagher and I am deafblind myself. This site is here to try and offer some help to Blind or deaf people, and especially deafblind people, and those who provide specialised services for those who are deafblind. A-Z to Deafblindness is also here, to make people more aware about deafblindness.

Definitions of Blindness and Low Vision

The Rehabilitation Research and Training Center on Blindness and Low Vision

Foundation Fighting Blindness

Largest private organization funding research to cure blinding retinal disorders such as retinitis pigmentosa, macular degeneration, Usher syndrome (deaf-blindness), affecting all ages and ethnicities.

HotBraille.com

Here you can send Braille letters, learn Braille, and meet people who share yourinterest in Braille.

Resources for the Visually Impaired

...a collection of links that I have either come to rely upon personally or which I have stumbled across in the course of my own personal webcrawling. They are offered here merely as jumping-off points for the exploration of blindness-related resources, for following any one of the links listed on this page will open a Pandora's box of information. And that, my friends, is the true beauty of hypertext...

VI Guide

This site contains information on many topics pertaining to parenting and teaching a child with visual impairments. My name is Betsy Walker and my inspiration for this site is my daughter Katie who is blind due to ROP.

Vision Help Network

The Vision Help Network provides nationwide referrals for optometric vision therapy and related diagnostic services. Our members include expert developmental and behavioral optometrists, college professors, and the authors of leading textbooks on vision therapy. Our web site provides accurate information about vision therapy, and guidance for choosing a qualified eye care provider.

Vision Therapy, Autism, and Sensory Integration

Because some sensory dysfunction is present in all individuals with autism, and because vision problems are more common in individuals with sensory impairments, it would benefit parents of children with autism greatly to become more knowledgeable about vision impairments and possible remedies.

World Federation of the Deaf/Blind

The World Federation of the Deaf/Blind hosts links to the New DeafBlind Zealand, the Australian DeafBlind Council, the European Blind Union, and A-Z to Deafblindness.

Aarskog Syndrome

Information from the Online Mendelian Inheritance in Man (OMIM).

Aarskog Syndrome - Facialgenital Dysplasia

Information from the Online Mendelian Inheritance in Man (OMIM).

Aarskog-Scott Syndrome: Confirmation of Linkage to the Pericentromeric Region of the X Chromosome

Information from the UAB Civitan International Research Center

Achondroplasia, Health Supervision for Children with

This set of guidelines is designed to assist the pediatrician in caring for children with achondroplasia confirmed by radiographs and physical features.

Acid Maltase Deficiency (AMDA): A Brief Summary

The Acid Maltase Deficiency Association, A M D A, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, also known as Pompe's Disease.

Acid Maltase Deficiency (AMD) And Other Metabolic Diseases of the Muscle

Information from the Muscular Dystrophy Association: "Ask the Experts"

Brain Tumor Foundation of America (National Brain Tumor Foundation)

Funding national research, providing free patient support services and education gives Help and Hope to children and adults whose lives are affected by brain tumors.

Guillain-Barre Syndrome Foundation International

Assists patients of this rare, paralyzing, catastrophic disorder of peripheral nerves. The goals are support, education, and research.

Glutaric Acidemia Type I (GA-I)

Save Babies Through Screening Foundation is comprised of volunteers. Some have children who were helped by newborn screening, and some have children who have died, or suffered brain damage. For many of the Foundation's volunteers, joy comes from knowing that your child was saved. Many hours of hard work have been done to help children, maybe even yours.

Glycogen Storage Disease II -- Acid Maltase Deficiency

Information from Online Mendelian Inheritance in Man (OMIM)

Infectious Disease Science Center

Deadly new bacteria and viruses are discovered daily. we need cures now! Please help us. We can't afford to lose this life or death race.

Isovaleric Acidemia

"Isovaleric Acidemia (IVA) is one of the Organic Acidemias. IVA is a hereditary metabolic disorder that prevents protein from properly breaking down in the system..."

(The) International Organization of Glutaric Acidemia

The International Organization of Glutaric Acidemia (IOGA) is an international, voluntary, and non-profit organization dedicated to promoting early detection, preventing neurological damage, and assisting in the treatment and rehabilitation of those affected by Glutaric Aciduria Type I (GA1) and other neurological diseases.

Interstitial Cystitis Association of America

Provides information, support and advocacy for persons with IC, a debilitating bladder disease. Educates medical community and public. Funds research to treat and cure IC.

Isovaleric Acidemia information

From PEDBASE

Joe Johnson - Call Again Soon

The mission of Call Again Soon is to provide a place where people affected by Leukodystrophy, and those who know and love them, can find information.

Lyme Disease Foundation

Lyme Disease: Chronic disabler of over 2 million people. Helpus eradicate this tick-borne disease. Your gift funds patient assistance, public/Physician awareness and research.

The MAGIC Foundation for Children's Growth

Includes a variety of divisions such as the Growth Hormone Deficiency Division.

The Marrow Foundation

The foundation supports patient assistance, assists the recruitment of etchnically diverse volunteers for the National Registry of unrelated donors, and sponsors research on marrow transplantation.

Metabolic Acidosis

Author: Karen L Stavile, MD, Associate Director, Assistant Professor, Department of Emergency Medicine, State University of New York Health Science Center at Brooklyn.

National Eating Disorders Association

Working to prevent, treat, and find a cure for anorexia, bulimia, and other eating disorders. Your gifts fund life-saving research, treatment referrals and education programs.

National Organization for Rare Disorders, Inc.®(NORD)

NORD is the only organization of its kind--a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families--as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities.

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Spanning the full spectrum of medicine and afflicting people of all ages and ethnic groups, these diseases encompass some of the most common, severe, and disabling conditions affecting Americans today: endocrine and metabolic diseases such as diabetes and obesity, digestive diseases such as hepatitis and inflammatory bowel disease, kidney and urologic diseases such as kidney failure and prostate enlargement, and blood diseases such as the anemias.

Online Mendelian Inheritance in Man - data base.

Welcome to OMIM(TM). This database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by NCBI, the National Center for Biotechnology Information. The database contains textual information, pictures, and reference information.

Organic Acidemia Association (OAA) Newsletter

More information about Organic Acidemia.

Proprionic Acidemia

From the Birth Disorder Information Directory.

Most Gene Organization

Directory of Online Genetic (conditions) Support Groups

The Teddy Bear Foundation For Achondroplasia

The United Leukodystrophy Foundation

Committed to the identification, treatment and cure of the fatal genetic disorders of the brain, spinal cord and peripheral nerves through education, networking and research.

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Linda Mac Dougall's Consulting - Homepage

ADVOCACY IN ACTION! Providing support for persons with disabilities and care providers, she specializes in assistance to program administrators and direct care staff. Helping people access and get the most out of community-based residential programs and independent living services. Her new homepage includes a list of her services, her background and "The Advocate's Voice", her personal message, upbeat and informative!

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   *Disclaimer - All advising interactions are to be considered my own personal opinion and should not be construed in any way, shape, or form as a diagnosis, prescription, or mandate for action without further consultation with a medical professional, therapist, specialist, or other authority who is licensed to give such opinions, if you feel this is necessary. I offer advice and personal assistance solely based on my educational background and many years of experience. Advice and information received can be used as a source of direction. The ILR directories were personally created to support persons with disabilities, senior citizens, and those with other health related needs. This is, however, not an endorsement of any of the programs, products, or services listed unless specifically noted as those of Michael True or TruEnergy Enterprises.

Michael S. True, M.Ed

Independent Life Resources - A World of Resources for Persons with Disabilities, Senior Citizens, and Those Who Care!

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This Webpage has been Bobby approved.

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