Support Groups D, E, F, G

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Slightly Creaky does extensive research to find the links you would most likely need and provides them for you in an easy-to-find format. You can access the various categories from any of our web pages using the top or side menus. Each category has generalized headings, followed by more specific ones.

Alphabetical List by Ailment

Updated June 21, 2008

Many support groups are named for people, are generalized and provide assistance for several related conditions, or are otherwise difficult to interpret. This page provides links alphabetically based upon specific ailments. Please scroll down, use the index link, or use your browser's "find" or "search" feature to get the the area you are seeking.

In addition to support groups, we include links to informational sites on these conditions.

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This listing is the result of more than 500 hours of research. It is the property of Slightly Creaky and may not be reproduced in any form. Every attempt has been made to provide an accurate description of each organization.

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Support Groups "D"

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"D"

Quick Links:     Deaf     Depression     Diabetes   

Deaf & Hearing Loss Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) is a lifelong resource, support network and advocate for listening, learning, talking and living independently with hearing loss.  Through publications, outreach, training, scholarships and financial aid, AG Bell promotes the use of spoken language and hearing technology.  Headquartered in Washington, D.C., with chapters located in the United States and a network of international affiliates, AG Bell's global presence provides its members and the public with the support they need-close to home.  With over a century of service, AG Bell supports its mission: Advocating Independence through Listening and Talking!
Hearing Loss Association of America  is a national consumer organization representing people who are hard of hearing and provides technical assistance for selecting Assistive Listening systems.
National Association of the Deaf is a national consumer organization representing people who are deaf and hard of hearing.
League for the Hard of Hearing     The League was founded in 1910 and is the premier hearing rehabilitation and human services agency in the world for infants, children and adults who are hard of hearing, deaf and deaf-blind, and their families. Over the years we have provided services to more than 1,250,000 people with hearing loss.
Deaf Queer Resource Center  The Deaf Queer Resource Center (DQRC) is a national nonprofit resource and information center for, by and about the Deaf Lesbian, Gay, Bisexual, Transgender, Transsexual, Intersex and Questioning communities
The Vestibular Disorders Association (VEDA)     Vestibular (inner ear) disorders can cause dizziness, vertigo, imbalance, hearing changes, nausea, fatigue, anxiety, difficulty concentrating, and other symptoms, with potentially devastating effects on a person's day-to-day functioning, ability to work, relationships with family and friends, and quality of life.
American Tinnitus Association  Tinnitus is the perception of ringing, buzzing, roaring, or other noises in the ears or head – when there is no external source of the noise.
Better Hearing Institute   The Better Hearing Institute is a not-for-profit corporation that educates the public about the neglected problem of hearing loss and what can be done about it. Founded in 1973, we are working to:  erase the stigma and end the embarrassment that prevents millions of people from seeking help for hearing loss, Show the negative consequences of untreated hearing loss for millions of Americans, and promote treatment and demonstrate that this is a national problem that can be solved.
American Society for Deaf Children   We believe deaf or hard-of-hearing children are entitled to full communication access in their home, school, and community. We also believe that language development, respect for the Deaf, and access to deaf and hard-of-hearing role models are important to assure optimal intellectual, social, and emotional development.  We believe there should be access to identification and intervention by qualified providers, family involvement, and educational opportunities equal to those provided for hearing children. The goal should be to provide children what they need in order to become self-supporting and fulfilled adults.  We affirm that parents have the right and responsibility to be primary decision-makers and advocates. For this role, parents need education, access to information, and support.
National Deaf Education Network & Clearinghouse    Laurent Clerc National Deaf Education Center is committed to developing the full Potential of deaf and hard of hearing students from diverse linguistic and cultural backgrounds who have a variety of abilities, skills, and experiences. Our goal is to provide an education that is academically challenging and fully accessible, where students develop a positive sense of self-worth and broad-based literacy. This includes the knowledge, skills, and attitudes necessary to function as successful, independent, contributing members of society.
Self Help for Hard of Hearing People     The Hearing Loss Association of America exists to open the world of communication for people with hearing loss through information, education, advocacy and support.          
Deaf/Blind Deafblind International   DbI brings together professionals, researchers, families, deafblind people and administrators to raise awareness of deafblindness. Central to our work is to support the development of services to enable a good quality of life for deafblind children and adults of all ages.
Deafblind Children  This page is being set up as a resource for parents of deafblind children. We face many challenges in our everyday lives looking after and communicating with our deafblind children.
Helen Keller National Center for Deaf-Blind  For over 110 years, Helen Keller Services for the Blind (HKSB) has been a pioneer in the field of blindness rehabilitation. Our mission is to help individuals of all ages who are blind or visually impaired, and who may have additional disabilities, to develop independence and to participate actively in their communities.
National Family Association for Deaf-Blind   The National Family Association for Deaf-Blind (NFADB) is a non-profit, volunteer-based family association. Our philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community.    
National Consortium On Deaf-Blindness  Our goal is to help parents, teachers, and others by providing them with information to foster the skills, strategies and confidence necessary to nurture and empower deaf-blind children.
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DeMorsier's Syndrome The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
Dengue Fever Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Depression Depression Alliance   We work to relieve and to prevent this treatable condition by providing information and support services. We also campaign to raise awareness amongst the general public about the realities of depression.
Families for Depression Awareness Families that work together are best able to cope with depressive disorders. Our organization, Families for Depression Awareness, helps people in caregiver roles and people with depressive disorders understand the conditions, reduce stigma, and share issues.             
Freedom From Fear  The mission of FFF is to impact, in a positive way, the lives of all those affected by anxiety, depression, and related disorders through advocacy, education, research and community support           
Depression and Bipolar Support Alliance     Depression and bipolar disorder (also known as manic depression) are both highly treatable medical illnesses. Unfortunately many people do not get the help they need because of misunderstanding the issues surrounding the illnesses or the fear associated with stigma.
National Foundation For Depressive Illness, Inc.    Dedicated to researching causes of depression, to support those dealing with depression, and to combat the stigma associated with depression. Though several organizations deal with mental illness, few, if any, actually focus internationally on depression in an encouraging, enlightening way.
Wing of Madness: For Teenagers With Depression        Wing of Madness Inc. is dedicated to disseminating information about depression to consumers. I call this "a depression guide for consumers" because I do not as a rule include a web site or information that is geared toward mental health practitioners. If I do include information written for professionals, it is worthwhile for the rest of us and I designate it as "technical". My goal is to disseminate clear, understandable information about depression on this page. If you're suffering from depression, the last thing you need is to wade through confusing, contradictory information or medical mumbo-jumbo.
Teens for Teens Teens for Teens was set up in 1996 with the aim of creating an on-line community for depression and other related disorders. We have grown to a comprehensive web site of over 400 pages of information and data.  Our aim is to provide an on-line support community to those adolescents that need it. We offer a good network of peers and other volunteers that are available at all times to answer questions or to offer guidance and advice on a variety of topics.
National Depressive and Manic-Depressive Association            DBSA is the nation’s leading patient-directed organization focusing on the most prevalent mental illnesses; depression and bipolar disorder. The organization fosters an understanding about the impact and management of these life-threatening illnesses by providing up-to-date, scientifically-based tools and information written in language the general public can understand.
National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
National Alliance for the Mentally Ill   The nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families who join together to meet the NAMI mission through advocacy, research, support, and education.
Dermatitis Herpetiformis Dermatitis Herpetiformis Online Community (UK)    Dermatitis herpetiformis’s name is descriptive, dermatitis being inflammation of the skin and herpetiformis meaning group. The typical features are small grouped itchy blisters, often on red plaques, situated on the back of the elbows and forearms, buttocks and front of the knees. Although these are the common sites the rash may in addition, occur anywhere on the body including face, scalp and trunk. The eruption is extremely itchy and may keep patients awake at night.
Developmental Disorders Eunice Kennedy Shriver Center   The Eunice Kennedy Shriver Center has been a pioneer in research, education, and service for people with developmental disabilities and their families for over three decades.
Diabetes Diabetes Action Research and Education Foundation  The Diabetes Action Research and Education Foundation is committed to the prevention and treatment of diabetes and to the funding of innovative, promising research aimed at finding a cure for diabetes and diabetes related complications.
Diabetes Exercise and Sports Association (DESA)     Diabetes Exercise & Sports Association (DESA) exists to enhance the quality of life for people with diabetes through exercise and physical fitness.           
Diabetes Insipidus Foundation   The mission of The Diabetes Insipidus Foundation, Inc. is improved treatment, and ultimately the prevention and cure of all forms of diabetes insipidus through research.  We will promote a greater public awareness and understanding of the disease.  Diabetes Insipidus is a disorder in which there is an abnormal increase in urine output, fluid intake and often thirst.  It causes symptoms such as urinary frequency, nocturia (frequent awakening at night to urinate) or enuresis (involuntary urination during sleep or "bedwetting").  Urine output is increased because it is not concentrated normally.  Consequently, instead of being a yellow color, the urine is pale, colorless or watery in appearance and the measured concentration (osmolality or specific gravity) is low.
Diabetes Research Institute Foundation   The Diabetes Research Institute (DRI) is a recognized world leader in cure-focused research.  Since its inception in the early 1970s, the DRI has made significant contributions to the field of diabetes research, pioneering many of the techniques used in islet cell transplantation.  From innovations in islet isolation and transplant procedures to advances in cell biology and immunology, the Diabetes Research Institute is now harnessing the power of emerging technologies to develop new cell-based therapies to restore insulin production.
American Association of Diabetes Educators  AADE is a professional association dedicated to promoting the expertise of the diabetes educator, ensuring the delivery of quality diabetes self-management training to the patient and contributing to the future direction of the profession.
American Diabetes Association  The American Diabetes Association is the nation's leading nonprofit health organization providing diabetes research, information and advocacy. The mission of the Association is to prevent and cure diabetes and to improve the lives of all people affected by diabetes.        
Defeat Diabetes Foundation      The mission of Defeat Diabetes Foundation is to inform, educate and alert the general public, diabetics, pre-diabetics and elected officials about the disease, its prevention and the consequences of undiagnosed and/or poorly managed diabetes and to provide accurate, up-to-date and practical information on the treatment and self-management of the disease.
International Diabetes Foundation    The International Diabetes Federation (IDF) is a worldwide alliance of 200 diabetes associations in 158 countries, who have come together to enhance the lives of people with diabetes everywhere. For over 50 years, IDF has been at the vanguard of global diabetes advocacy. The Federation is committed to raising global awareness of diabetes, promoting appropriate diabetes care and prevention, and encouraging activities towards finding a cure for the different types of diabetes. It is the mission of IDF to promote diabetes care, prevention and a cure worldwide.      
Society for Pediatric and Adolescent Diabetes  (Germany)     A professional organization whose aims are to promote clinical and base science, education and advocacy in childhood and adolescent diabetes. The strength of ISPAD lies in the scientific and clinical expertise in childhood and adolescent diabetes of its members. ISPAD is the only international society focusing specifically on all types of childhood diabetes.        
Joslin Diabetes Center   Joslin Diabetes Center is the only diabetes institution in the world that goes beyond a single focus. With efforts in these three critical areas, a synergy develops: researchers, clinicians and educators collaborate in ways that produce cutting-edge scientific discovery, unique clinical care models and pioneering educational strategies. This one-of-a-kind framework has an impact on people with diabetes locally, nationally and across the globe.
Juvenile Diabetes Foundation   If you or someone you love has recently been diagnosed with type 1 (juvenile) diabetes, we at JDRF can help.  Our Online Diabetes Support Team is made up of volunteers who have “been there” and are available to offer you immediate, one-on-one support. We also provide loads of practical info about diabetes and its management. 
Glycemic Index On-Line   Not all carbohydrate foods are created equal, in fact they behave quite differently in our bodies. The glycemic index or GI describes this difference by ranking carbohydrates according to their effect on our blood glucose levels. Choosing low GI carbs - the ones that produce only small fluctuations in our blood glucose and insulin levels - is the secret to long-term health reducing your risk of heart disease and diabetes and is the key to sustainable weight loss. (University of Sydney, Australia) 
National Institute of Diabetes and Digestive and Kidney Diseases   Conducts and supports research on many of the most serious diseases affecting public health. The Institute supports much of the clinical research on the diseases of internal medicine and related subspecialty fields as well as many basic science disciplines.     
Islet Foundation, The     The Islet Foundation focuses its resources to advance one specific line of research from the laboratory to human trials and, ultimately, to a routine cure for insulin-dependent diabetes. Rather than spread its resources among many diabetic management and research initiatives, TIF is betting on a single body of research, one which many researchers feel is the most likely to result in a near-term cure.
NDI Foundation   Formed to support education, research, treatment and cure for Nephrogenic Diabetes Insipidus. Our goal is to create a communication channel to serve the entire NDI community: patients and their families, researchers, physicians and other health care providers.  In recent years much progress has been made in determining the causes of both the acquired and familial forms of Nephrogenic Diabetes Insipidus and in developing treatment options. We feel that by providing communication resources to the researchers they can increase the pace of their discoveries.
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Dissociation Disorders National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Diverticulitis Diverticular Disease and Diverticulitis      Diverticular disease is a condition in which small pockets or out-pouchings occur in the bowel. These pockets (diverticula) can remain trouble-free or they can become inflamed or infected and cause symptoms.
Dorcum's disease Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Down Syndrome National Association for Down Syndrome (NADS)  NADS is the oldest organization in the country serving individuals with Down syndrome and their families. It was founded in Chicago in 1961 by parents who chose to go against medical advice and raised their children with Down syndrome at home. Their pioneering efforts have made it easier for later generations of individuals with Down syndrome to be accepted by their families and communities, to develop their capabilities, and to work towards independence. Our mission is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of community life. We offer information, support, and advocacy. 
Down Syndrome Information Network   The Down Syndrome Information Network offers a range of information resources and online services to the international Down syndrome community. It aims to provide information and services for families, careers, professionals and researchers worldwide. This website has over 1,000 pages of information, equivalent to at least 6,000 printed pages.
Down Syndrome International (DSI)    Down Syndrome International is a federation of international organizations and individuals committed to ensuring the quality of life and human rights for all people with Down syndrome.      
UPSIDE! Down Syndrome Society   An informal society of individuals, parents, and friends involved with the world of Down Syndrome.
National Down Syndrome Congress  Our sons and daughters with Down syndrome are now an integral part of daily life. They attend our schools, participate in their communities, hold jobs, pay taxes, vote. They bowl, play softball, go to football games. Some live with their families or in small group homes. And, increasingly, others live independently. Importantly, they contribute to their communities, giving back a measure of what they have gotten.
National Down Syndrome Society    The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome.      
International Mosaic Down Syndrome Association   Children with mosaic Down syndrome have two distinct cell groupings. In some cells there is a total of 46 chromosomes, which is the “typical” group. In other cells there is an extra copy of the chromosome #21, making 47 cells total for this group.
Dubowitz Syndrome Dubowitz Syndrome Support Network   Dubowitz Syndrome is a rare syndrome found in approximately less than 200 people around the world. Generally, the child has intrauterine growth retardation and has a low birth weight.  Afterwards, the child is sometimes labeled as failure to thrive
Dwarfism Little People of America    Little People of America will assist dwarfs with their physical and developmental concerns resulting from short stature. By providing medical, environmental, educational, vocational, and parental guidance, short-statured individuals and their families may enhance their lives and lifestyles with minimal limitations. Through peer support and personal example, our members will be supportive of all those who reach out to LPA. Lastly, by networking with national and international growth-related and genetic-support groups, LPA will enhance knowledge and support of short-statured individuals.
Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Dysautonomia Dysautonomia Foundation   Familial Dysautonomia is a genetic disease present at birth, primarily causing dysfunction of the autonomic and sensory nervous systems. 
Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Dyskinesias Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.
Dyslexia Helen Arkell Dyslexia Centre (UK)   HADC is the oldest established dyslexia centre in the UK and believes that anyone with dyslexia should be offered expert assessment and tuition
International Dyslexia Association    The International Dyslexia Association is a non-profit organization dedicated to helping individuals with dyslexia, their families and the communities that support them. IDA is the oldest learning disabilities organization in the nation. Our goal is to provide the most comprehensive forum for parents, educators, and researchers to share their experiences, methods, and knowledge.     
Dyspraxia Dyspraxia: Can We Talk?   This site is a brochure and handout resource for Speech Language Pathologists, parents and friends. We specialize in free, quickly read and easily understood materials about working with speech delayed children.
Dyspraxia Foundation (UK)   Dyspraxia is generally recognized to be an impairment or immaturity of the organization of movement. Associated with this may be problems of language, perception and thought. Other names for dyspraxic include Clumsy Child Syndrome; Developmental Co-ordination Disorder (DCD); Minimal Brain Dysfunction: Motor learning Difficulty; and Pereceptuo-motor Dysfunction.   
Dystonia Dystonia Medical Research Foundation   Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures.
Dystonia On-Line Support Group   Providing support and legal information.  
Dystonia Society (UK)    As the Society’s membership has grown, individuals have come together locally around the UK to establish local support groups and contacts providing opportunities for people to meet, share experiences, provide mutual encouragement and support. Many branch meetings have speakers on various aspects of dystonia, its treatment, and related issues such as access to services, employment issues, benefits and mobility.
Care4Dystonia   Dystonia is a neurological disorder characterized by over-activity of a specific group of muscles and/or muscle. It is the over-activity of these specific muscles that causes involuntary movements and tremors, sustained muscle contractions, and abnormal postures.
Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.
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Support Groups "E"

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"E"

Quick Link:     Epilepsy

Ectodermal Dysplasia National Foundation for Ectodermal Dysplasias (US) The ectodermal dysplasia syndromes are a group of about 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby. ED syndromes affect both males and females of all races and ethnic groups.   The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. During embryonic development, these and/or other parts of the baby’s body, including the lens of the eye, parts of the inner ear, the fingers and toes, or nerves, among others, may fail to develop normally. 
National Foundation for Ectodermal Dysplasia (UK)   Ectodermal Dysplasia is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified. The Ectodermal Dysplasias are heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair (tends to be very thin and sparse), teeth (absent, pointed or conical), nails, sweat glands (little or no sweating), cranial-facial structure, the eyes, digits and other parts of the body.  
Education Services The Office of Special Education and Rehabilitative Services    The Office of Special Education and Rehabilitative Services (OSERS) supports programs that assist in educating children with special needs, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities.
Edward's Syndrome   --  see Trisomy
Encephalitis Encephalitis Society    The Society’s stated aim is to improve the quality of life of all people affected directly and indirectly by encephalitis. In some instances where people are affected by encephalitis the long-term prognosis can be very good, with many people coming through the illness with little or no difficulties. However because there are occasions where more severe problems can occur, we have had to make our information as broad and far-reaching as possible.
Epidermolysis Bullosa EB Info World  Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (Squamous Cell) that is somehow touched off by EB.     
Ehlers-Danlos Syndrome Ehlers-Danlos National Foundation    Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.  Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis.  Skin: soft velvet-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).
EDS Today     Frequently, people with Ehlers-Danlos Syndrome are encouraged to perform as contortionists. Probably, most of these people are unaware of their condition, as few doctors are educated enough to diagnose it. And those who are aware tend not to know how dangerous repeated dislocation of the joints is for their future well-being and mobility
Emphysema Emphysema Foundation For Our Right To Survive   As well as providing a very vital support, through a joint email discussion list and educational resource for its members, we are also working to educate and inform patients and care providers as well as promote deeper research for more effective treatment and hopefully  a cure for Emphysema and other Chronic Obstructive Pulmonary Disease
Enchondroma Diseases American Association of Multiple Enchondroma Diseases     AAMED is the source for news & information about bone tumor diseases, research and services for adults and children with Enchondromatosis, Multiple Enchondroma, Ollier's disease, Maffucci's syndrome, and their families.
Endometriosis Endometriosis Association   Endometriosis is a painful, chronic disease that affects 5 1/2 million women and girls in the USA and Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.
EnvironmentaL Health American Lung Association    As part of our American Lung Association® community, you have the benefits of in-depth and timely information on lung issues including asthma, tobacco control, and environmental health.
Epidermolysis Bullosa Epidermolysis Bullosa Support & Information. Generic listing of international support groups and online information sites.
Dystrophic Epidermolysis Bullosa Research Association of America. "DEBRA's mission is to raise funds to encourage and support research into the causes, treatment and cure of Epidermolysis Bullosa and other genetic disorders of the skin, promote education and advocacy, and to provide support and services to people with EB and their families by assisting them in finding medical, social, and genetic counseling."
EBAers. "EBA (Epidermolysis Bullosa Acquisita) is a rare autoimmune blistering and fragile skin disorder which can also affect the mucous membranes. It is characterized by the presence of IgG autoantibodies which target type VII collagen -- the major anchoring component that connects the basement membrane onto the dermal structures. This is why the blistering occurs. Painful injury can occur from minor friction or shearing action upon the skin as well as from even the most minor trauma. Rashes and itching are also common problems associated with this disease. The chronic inflammation, blistering, minor trauma injuries, and resulting scars can severely impair or hinder the normal activity and functioning of the EBA patient on a daily basis."
Epilepsy Epilepsy Foundation of America (EFA)   The Epilepsy Foundation is the national voluntary agency solely dedicated to the welfare of the 3 million people with epilepsy in the U.S. and their families. The organization works to ensure that people with seizures are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services. In addition to programs conducted at the national level, epilepsy clients throughout the United States are served by local Epilepsy
Epilepsy Institute, The     The Epilepsy Institute, a non-profit social service organization, is dedicated to improving the quality of life of people with epilepsy and their families.
American Epilepsy Society   The American Epilepsy Society promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy. Membership in the Society is made up of clinicians and researchers investigating basic and clinical aspects of epilepsy, and other health-care professionals interested in seizure disorders.
National Society for Epilepsy   (UK) The National Society for Epilepsy is committed to providing information and support to people with epilepsy. We also provide care for people with epilepsy through medical and residential services.        
Parents Against Childhood Epilepsy (PACE)  A research and Education organization
Epispadias Hypospadias.org            Hypospadias and epispadias are birth anomalies that result from defective development of the penis during embryological development.  Normally the urethra (the tube that serves as a conduit through the penis for passage of urine and semen) runs the entire length of the penis, forming an opening at the tip.  However, the penis sometimes does not form correctly and the urethra fails to reach the tip of the penis.  The incompletely developed urethra may form an opening at the under side of the penis (hypospadias) or the upper side of the penis (epispadias). 
Erythropoietic Protoporphyria Erythropoietic Protoporphyria Research and Education Fund   the Erythropoietic Protoporphyria Research and Education Fund is a support group exclusively for patients with EPP and their families.
Essential Tremor International Essential Tremor Foundation (IETF) Of the 20-plus different kinds of tremor, essential tremor is the most common. Essential Tremor is also known as familial tremor, benign essential tremor or hereditary tremor. There are medical treatments that can help people with tremor live a fuller life, but only a small percentage of those with this condition get medical help. This site is devoted to helping people diagnosed with essential tremor.
Worldwide Education and Awareness for Movement Disorders WE MOVE is the Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activities on the web.
National Tremor Foundation, The     We aim to offer a support and advice to all sufferers of tremor. The most common of these is essential tremor, quite often hereditary, but we also have members with more complex and unusual tremors such as writing tremor, primary orthostatic tremor and myoclonic dystonic to name a few.
Euthanasia Not Dead Yet     People already have the right to refuse unwanted treatment, and suicide is not illegal. What we oppose is a public policy that singles out individuals for legalized killing based on their health status. This violates the Americans With Disabilities Act, and denies us the equal protection of the law. Some bioethicists have even started to argue that intellectually disabled people are not persons under the law.
Eye Disorders – see Vision
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Support Groups "F"

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"F"

Quick Link:     Fibromyalgia

Fabry Disease Fabry Support & Information Group Our mission is to raise awareness of Fabry disease and its symptoms. Fabry disease results from abnormal deposits of a particular fatty substance (called globotriaosylcera-mide) in blood vessel walls throughout the body.  
Facial Disorders Let's Face It     Let's Face It is an online resource for the dissemination of a wide range of information about facial differences. Our intended audience includes individuals with facial differences; their friends and family; medical, dental and mental health care providers; teachers; employers, and those interested in learning more about facial differences. Through the sharing of this information, we hope to promote the full and equal participation of people with facial differences in all facets of life.      
Familial Dysautonomia Familial Dysautonomia Hope Foundation  Familial Dysautonomia is a progressive and fatal neurological disorder that affects the autonomic and sensory nervous systems. An astonishing 1 in 25 to 30 Eastern European (Ashkenazi) Jews carry the common mutation that causes FD, a rate similar to that of Tay-Sachs.
Fanconi Anemia Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Fatty Liver Disease Children’s Liver Disease Foundation Our vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.
Fatty Oxidation Disorders FOD Family Support Group Fatty Oxidation Disorders are genetic metabolic deficiencies in which the body is unable to oxidize fatty acids to make energy because an enzyme is either missing or not working correctly.        
Fetal Alcohol Syndrome FASCETS  The mission of FASCETS (Fetal Alcohol Syndrome Consultation, Education and Training Services, Inc) is to contribute to the prevention of Fetal Alcohol  Spectrum Disorders by increasing understanding of FASD as a brain-based physical disability, thereby preventing secondary defensive behaviors and improving outcomes. .Our objectives are to:: support improved outcomes for those with FASD, develop partnerships among parents and professionals, disseminate information about FASD throughout the community, enhance existing programs through augmentation or adaptation, support development and implementation of effective, appropriate programs, parenting and practice techniques in families, agencies and institutions, and provide relevant, current information and resources for supporting children, adolescents and adults with FASD, their parents, families, professionals, agencies and institutions.
Arium  Arium is a non-profit organization dedicated to the prevention of addictions and their effects upon individuals, families and our communities, through the provision of resources, information and research concerning drug and alcohol abuse, fetal alcohol syndrome and other substance abuse issues
FG Syndrome Family Alliance, Inc.   (Also called Opitz-Kaveggia syndrome ) FG Syndrome is an X-linked genetic syndrome, believed to affect both boys and girls; which causes a variety of physical anomolies, developmental delays, and special health needs.
FG Syndrome FG Syndrome Family Alliance, Inc.            (Also called Opitz-Kaveggia syndrome ) FG Syndrome is an X-linked genetic syndrome, believed to affect both boys and girls; which causes a variety of physical anomolies, developmental delays, and special health needs.
Fibrous Dysplasia Fibrous Dysplasia Support Online     Fibrous dysplasia (FD) is a bone disease characterized by areas of abnormal growth or lesions in one, several, or many bones. FD can occur in any bone. The skull frequently is affected as are legs, arms, and ribs. The majority (about 70 %) of people with FD have only one bone site involved, a condition called monostotic FD. When FD is in more than one bone it is called polyostotic FD or PFD.
Fibromyalgia Immunesupport.com    We offer over 6,000 Fibromyalgia and Chronic Fatigue Syndrome articles and medical abstracts, current treatment advice from the world's leading FM & CFS specialists, and the world's busiest FM & CFS message boards.
Action For CFIDS/M.E.    Fibromyalgia help.
American Fibromyalgia Syndrome Association, Inc.  AFSA is the only charitable organization whose primary mission is to seed research in FMS and CFS. We acknowledge that patient and physician education, public awareness and advocacy are all important ingredients in aiding the lives of people with FMS and CFS.           
National Fibromyalgia Association   The National Fibromyalgia Association’s mission is:To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.   
National ME/FM Action Network  is a Canadian organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Fibromyalgia Syndrome through education, advocacy, support, and research.The Network seeks to effect positive change in the attitudes, policies, and practices of government, medical governing bodies, business, the media, and the general public.    
Fibrodysplasia Ossificans International Fibrodysplasia Ossificans Progressiva Assoc. Fibrodysplasia Ossificans Progressiva (FOP). Simply stated, FOP causes muscles and other connective tissue to turn into bone, eventually causing immobility as FOP bone fuses joints.
Fibromuscular Dysplasia Fibromuscular Dysplasia Society of America   The FMDSA website is designed to help patients and physicians find the latest information on Fibromuscular Dysplasia as well as  information on how you can participate in research, spread awareness, and find support resources
Fibrous dysplasia Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Fistula Fistula Foundation, The  An obstetric fistula develops when blood supply to the tissues of the vagina and the bladder (and/or rectum) is cut off during prolonged obstructed labor. The tissues die and a hole forms through which urine and/or feces pass uncontrollably. Women who develop fistulas are often abandoned by their husbands, rejected by their communities, and forced to live an isolated existence.       
Worldwide Fistula Fund   Our mission is to promote excellent, ethical whole-person care for women with obstetric fistulas.   Our strategy is to band together and support a network of committed individuals with fistula expertise who share this common ideal.  
Floating Harbor Syndrome Floating Harbor Syndrome Support Group of North America  Floating Harbor Syndrome is a rare genetic disorder that was named for the first two identified patients who were seen at Boston Floating Hospital and Harbor General Hospital in California. The main characteristics of this syndrome are: short stature, delayed bone growth, delay in expressive language, and distinct facial features.
Food Disorders National Mental Health Association   Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Foster Care Hope4KidZ, Inc  Hope4KidZ is a grassroots effort to increase the protection, safety, and well-being of children who are in the care, custody, and control of the foster care system. The issue of abused children is not heart-warming, but it is heart-wrenching, and together, we can implement solutions and demand absolute accountability of anyone who would harm a child with impunity.
Fragile X National Fragile X Foundation   Fragile X is a family of genetic conditions, which can impact individuals and families in various ways. These genetic conditions are related in that they are all caused by gene changes in the same gene, called the FMR1 gene.  Fragile X syndrome is the most common cause of inherited mental impairment. This impairment can range from learning disabilities to more severe cognitive or intellectual disabilities. (Sometimes referred to as mental retardation.) FXS is the most common known cause of autism or "autistic-like" behaviors. Symptoms also can include characteristic physical and behavioral features and delays in speech and language development.
FRAXA Research Foundation, Inc. Fragile X is the most common inherited cause of mental impairment. It is also the most common known cause of autism.
Freeman Sheldon Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Freeman-Sheldon Parent Support Group     Freeman-Sheldon Syndrome (also known as "Whistling Face Syndrome") is a rare genetic condition which characteristically includes a small "whistling" mouth, a flat mask-like face, club feet, joint contractures usually involving the fingers and hands, and under-development of the cartilage of the nose. Intelligence is usually normal. Most of the features of this syndrome are due to muscle weakness.
Fructose Intolerance MedHelp - Fructose Intolerant message board and support. 
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Galactosemia Parents of Galactosemic Children Parents of Galactosemic Children provides information and networking between affected families and professionals. Classic Galactosemia is a rare genetic metabolic disorder. The child inherits a gene from both parents. Normally when a person consumes a product that contains lactose (e.g., dairy products such as milk, cheese, butter), the body breaks the lactose down into galactose and glucose. Glucose is the sugar used by the body for energy. Galactosemia means too much galactose in the blood caused by the individual "missing" the enzyme to convert galactose into glucose. This accumulation of galactose is a poison to the body and can cause serious complications such as the following and if untreated, as high as 75% of infants will die: an enlarged liver: kidney failure, cataract, brain damage
Gastrointestinal Disorders Foundation for Functional Gastrointestinal Disorders   The International Foundation for Functional Gastrointestinal Disorders addresses the issues surrounding life with gastrointestinal functional and motility disorders and increases the awareness about these disorders among the general public, researchers, regulators, and the clinical care community.
Pediatric Adolescent Gastroesophageal Reflux Association    The Pediatric / Adolescent Gastroesophageal Reflux Association provides information and support to parents and children dealing with Gastroesophageal Reflux, a condition in which stomach contents - food and gastric acid - frequently flow back up out of the stomach into the esophagus. The food that comes up may or may not flow all the way out of the mouth. It may be forceful vomiting which rapidly and completely empties the stomach, or it can be more like a "wet burp" that doesn't reach the mouth.
Gauchers Disease Children's Gaucher Research Fund    The Children's Gaucher Disease Research Fund is a non-profit organization, that raises funds to coordinate and support research aimed at finding a cure for Gaucher disease as well as providing support to families who have children who battle this disease.  Gaucher ('go-shay) disease is a genetic disorder, which results in the deficiency in an enzyme, causing old cells to be stored in areas such as the liver, spleen, lungs, lymph system, and bones instead of being expelled from the body. In more severe cases they also accumulate in the central nervous system.       
National Gaucher Foundation     The National Gaucher Foundation is dedicated to supporting and promoting research into the causes of, and a cure for Gaucher Disease. The mission of the NGF is to fund vital research programs to ultimately find alternate treatments and a cure. To meet the ever- increasing needs of individuals with Gaucher disease and their families, the NGF has financial assistance programs and offers a wide-range of resources. In an effort to promote community/physician awareness and educational programs, the NGF holds live Web meetings, conferences, patient meetings and seminars, publishes a quarterly newsletter and has both national and regional marketing programs.     
Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Glaucoma Glaucoma Research Foundation    Glaucoma is a group of diseases that can steal sight without warning or symptoms. Three million Americans have it. Only half know.
Gilbert’s Disease Children’s Liver Disease Foundation Our vision is that childhood liver disease will be understood and fought effectively thereby ensuring that young people with liver disease and families will be able to take control of their lives and achieve their full potential.
Gilbert's Syndrome Gilbert's Web (UK)    Gilbert's Syndrome is a group of symptoms caused by a dysfunction in the liver regarding the processing of bile into the bloodstream and the breakdown of toxins. The body needs to work extra hard to ensure that the liver deals with bilirubin and extra toxins. Toxins are less easily dealt with by the liver and a person with Gilbert's Syndrome may have a yellowing of the skin and eyes, fatigue, weakness and loss of appetite (amongst other symptoms).   An initial miss diagnose of Hepatitis A, B, C or E is relatively common and can add to the stress for sufferers.
Glutaric Aciduria IOGA  Dedicated to promoting early detection, preventing neurological damage, and assisting in the treatment and rehabilitation of those affected by Glutaric Aciduria Type I and other neurological diseases. Glutaric Acidemia is a genetically inherited disease, also called Glutaric Aciduria, which causes brain damage in infants and young children. 
Gluten Intolerance Gluten Intolerance Group   The mission of the Gluten Intolerance Group of North America® is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives.   
Glycine Disorders NKH International Family Network Nonketotic Hyperglycinemia is an inherited metabolic disorder. Patients suffering from this disorder have elevated level of glycine, a basic amino acid, in blood, cerebrospinal fluid (CSF), and urine. Some patients died in the newborn period after a course characterized by lethargy, weak cry, generalized hypotonia, absent reflexes, and periodic myoclonic jerks. Survivors are subject to various degrees of mental retardation.
Glycoprotein Storage Diseases International Society for Mannosidosis & Related Diseases ISMRD advocates for families and patients affected by one of the Glycoprotein Storage Diseases: Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Mucolipidosis, Schindler Disease and Sialidosis. These diseases are the ultra-orphans of the Lysosomal Storage Disease family, which encompass over 40 similar disorders, and currently have few treatments beyond symptomatic care.   
Jewish Genetic Disease Consortium    A number of genetic disorders occur more frequently in certain ethnic groups. In the Ashkenazi Jewish population (those of Eastern European descent), approximately 1 in 4 individuals is a carrier of a gene for a condition that could be severe and may result in the early death of a child.
Glycosylation CDGS Family Network, The  CDG are a group of inherited disorders that affect a process called glycosylation. Glycosylation is a process by which all human cells build long sugar chains that are attached to proteins.  If one of these enzymes malfunction then the cells in the body of a child or adult cannot glycosylate correctly. There are approximately 500 cases of all types of CDG worldwide, it is probably only a few percent of the total patients.  Some children with CDG have serious life-threatening medical problems during their infancy.  Mortality in CDG-Ia children is about 20% during the first few years, but they stabilize after childhood.  Individuals with CDG require expert medical care, sometimes from multiple subspecialists.   Children and adults with CDG have varying degrees of disability, including cognitive impairment, speech difficulties, poor balance and motor skills.  As children with CDG- Ia grow older, they exhibit developmental delay, vision problems, seizures, and stroke-like episodes.  
Goiter Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Thyroid Foundation of America      Your thyroid gland tells every cell in your body the rate at which it should function. Having too little hormone, called hypothyroidism, puts you into a dragging slowdown. This is a problem for more than 10 million Americans-of whom 8 million don't know it. Having too much hormone, called hyperthyroidism, races your engine, so you feel all revved up-as if you were burning out. This problem affects some 4.5 million Americans, but at least 600,000 of them have yet to be diagnosed.
Goldenhar Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Goodpasture’s Syndrome Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support. Keep a wellness journal, read members’ stories, and chat with new friends with over 500 support groups.
Gorlin Syndrome National Craniofacial Association  The National Craniofacial Association has been dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
Gout Arthritis.org: Gout    Gout (gowt) causes sudden, severe attacks of pain and tenderness, redness, warmth, and swelling in some joints. Usually affects one joint at a time -- often the big toe.  Gout results from a build-up in the body of too much uric acid, which forms crystals that deposit in joints and cause inflammation. Uric acid is a substance that normally forms when the body breaks down waste products called purines. Gout can be inherited or happen as a complication of another condition.
Purine Research Society    When we consider the many different roles purines play in our metabolism, it is not surprising that the diseases of purine metabolism are as varied, ranging from asymptomatic conditions, which are only discovered accidentally, to disorders with severe neurological abnormalities, which are ultimately fatal. As with other metabolic diseases, each disorder is caused by a defective gene which results in an enzyme with too little or too much catalytic activity.
Graves' Disease National Graves' Disease Foundation      The leading cause of hyperthyroidism, Graves' Disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone. Similar antibodies may also attack the tissues in the eye muscles and in the pretibial skin (the skin on the front of the lower leg).        
Growth Hormone Deficiency The Magic Foundation Major Aspects of Growth In Children  (MAGIC)  is made up of more than 25,000 families. The majority of us are parents of children with growth disorders and others are affected adults.
Guillain-Barré Syndrome GBS/CIDP Foundation         Guillain-Barré Syndrome is an inflammatory disorder of the peripheral nerves those outside the brain and spinal cord.  It is characterized by the rapid onset of weakness and, often, paralysis of the legs, arms, breathing muscles and face.  GBS is the most common cause of rapidly acquired paralysis in the United States today, affecting one to two people in every 100,000.It typically begins with weakness and/or abnormal sensations of the legs and arms.  It can also affect muscles of the chest, face and eyes.  Although many cases are mild, some patients are virtually paralyzed.  Breathing muscles may be so weakened that a machine is required to keep the patient alive.  Many patients require an intensive care unit during the early course of their illness, especially if support of breathing with a machine is required.  Although most people recover, the length of the illness is unpredictable and often months of hospital care are required. The majority of patients eventually return to a normal or near normal lifestyle, but many endure a protracted recovery and some remain wheelchair-bound indefinitely.     
Gulf War Syndrome GulfLINK  GulfLINK was established in 1995 to provide on-line access to medical, operational, and intelligence documents from the 1990-1991 Gulf War.  Its purpose was and is to provide Service members, veterans, and any interested person with information on what happened during that war that might have affected the health of those who served.   
Deployment Health Clinical Center    Deployment Health Clinical Center arose from the studies and treatment for Gulf War illnesses. DHCC is chartered by the DoD Health Affairs as the clinical arm of the overall effort to serve soldiers during post-deployment. This site provides content relevant to health-related issues that soldiers encounter when returning from deployment.
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