Support Groups C - D
How to Use -- Contents
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.
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.
Alphabetical List: |
Quick Links to selected categories: |
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Support Group Home Page Includes directions, hints for use, etc. |
See the "Medical Information" page for Medical Definitions, Pharmaceuticals and Home Remedies, Advocacy Groups, Medical Articles | ||
| Have We Missed a Support Group or Ailment? We are constantly looking for more information and more links. Please help us improve our site and service. The Internet had millions of web pages dedicated to medical conditions and support groups; we can only sample a few of them. If you know any sites we should include write to suggestions@slightlycreaky.com | |||
Caution - Proceed with care. Slightly Creaky is not responsible for the content of web sites listed here nor the actions taken by the people owning, managing, or participating on them.
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Updates: We review and update this page every 4 months. Many support groups change names or even terminate their services. Should you discover a bad link or wish to suggest that we add one, please contact suggestions@slightlycreaky.com
We try to avoid commercial sites, but in many cases they are the only ones who provide information and support. If you are looking to buy or sell medical products, please use a generalized search engine.Support Groups C through Cg
"C" through "Cg"
| Cadasil | CADASIL Together We Have Hope We are devoted to promoting awareness, support and research for this rare genetic disease including patients, families, friends and healthcare providers. CADASIL, is an inherited form of stroke and other impairments. This condition affects small blood vessels, mainly in the brain. An abnormality in the muscle cells surrounding these blood vessels gradually destroys the blood vessel cells. The resulting blood vessel damage can lead to migraines, emotional and mental disorders, stroke-like episodes, dementia, and other impairments of normal brain function. Patients with CADASIL are also at increased risk of heart attack |
| Cancer | Association of Oncology Social Workers Over 1000 Association of Oncology Social Work members from around the world are committed to advancing excellence in psychosocial care of persons with cancer, their families and their caregivers. Experts in networking, education, advocacy, research, and resource development, AOSW members are champions of psychosocial interventions that enhance quality of life and survivorship of persons with cancer and their families. These services are designed to assist groups and communities as well as individuals through counseling, stress and symptom management, care planning, case management, navigation, education and advocacy. |
| Alliance for Lung Cancer Advocacy, Support, & Education We are is the only national non-profit organization dedicated solely to patient support and advocacy for people living with lung cancer and those at risk for the disease. | |
| Facing Our Risk of Cancer Empowered (FORCE) FORCE is for women with increased risk of cancer due to family history and genetic status, and for members of families in which a BRCA mutation may be present. | |
| Gilda's Club Worldwide The mission of Gilda's Club is to provide meeting places where men, women and children living with cancer and their families and friends join with others to build emotional and social support as a supplement to medical care. Free of charge and nonprofit, Gilda's Club offers support and networking groups, lectures, workshops and social events in a nonresidential, homelike setting. | |
| Cathy's EC Café Esophageal cancer forum. | |
| Lung Cancer Alliance The Lung Cancer Alliance is the only national non-profit organization dedicated solely to patient support and advocacy for people living with lung cancer and those at risk for the disease. | |
| LUNGevity Foundation The Foundation's goal is to save the lives of the 213,000 Americans newly diagnosed with lung cancer each year, 84% of whom will die within five years without the development of new diagnostic and treatment methods. Partnering with the foremost physicians and research scientists in the world, the LUNGevity Foundation funds innovative research designed to treat and cure lung cancer, the nation's leading cancer killer. | |
| National Kidney Cancer Association The Kidney Cancer Association (KCA) is a charitable organization made up of patients, family members, physicians, researchers, and other health professionals. We fund, promote, and collaborate with the National Cancer Institute (NCI), American Society for Clinical Oncology (ASCO), American Urologic Association (AUA), and other institutions on research projects. We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels. | |
| Young Adults Surviving Glioblastoma Glioblastoma mutiforme is the "most common primary brain tumor" and the most aggressive form of brain cancer. Prognosis according to statistics are on average 6 months to one year. The books say this disease primarily effects adults over the age of 50. "younger patients tend to get a better prognosis than the elderly." Young Adults Surviving Glioblastoma (YASG) was formed because people under the age of 50 are effected by GBM. | |
| Women's Cancer Network The mission of the Women's Cancer Network is to keep women informed and to enable them to be their own health advocates. | |
| Patients Against Lymphoma Patients Against Lymphoma was founded by patients and caregivers directly affected by lymphomas, a kind of blood cancer that has risen 4% annually between 1970 and 1990. Our mission is to provide timely access to evidence-based information on lymphoma and its treatments. We also actively engage the research community - providing patient perspectives on the direction of clinical research and the design of clinical trials. | |
| Orchid Cancer Appeal (UK) The Orchid Cancer Appeal was the first registered charity dedicated to fund research into diagnosis, prevention and treatment of testicular, prostate and penile cancer and to increase public awareness of these previously neglected diseases. | |
| Pregnant with Cancer Network Our mission at the Pregnant With Cancer Network, is to let you know that you are not alone. Being diagnosed with cancer when you're pregnant can be a terrifying and lonely experience. You may feel like the only pregnant woman to ever be given such devastating news | |
| Cancer Warriors Cancer Warriors aims to be a source of encouragement and support to the courageous kids who battle cancer, and their siblings, during their journey. We want the families to know they are loved and that they are not alone, and help them find hope and renewed strength. Through our program "The Angel Network" we aim to bring together caring individuals, groups, churches, businesses, etc. that are looking for a way to reach out and bring encouragement to families of children battling cancer, allowing them to directly support these kids, while bringing public awareness to childhood cancer. | |
| Planet Cancer A a community of young adults with cancer. Take a look around at the info and funny stuff on the site. Pop over to our social networking community and talk with other young adults on My Planet. If you feel strangely at home, join Planet Cancer now! We'll keep you current on young adult issues, opportunities, and what's happening on the Planet. | |
| Groop Loop A safe place for teens with cancer and their families to build an online community to find support, education and hope. | |
| Cancer Survivors Network We celebrate by supporting one another, sharing our stories and what we've learned, and by living life to the fullest one day at a time. | |
| Cancervive Cancervive is an organization that responds to the needs of cancer survivors and their families. We are committed to providing practical resources to assist you. | |
| Cancer, Colorectal | C3: Colorectal Cancer Coalition C3™ pushes for research to improve screening, diagnosis, and treatment of colorectal cancer; for policy decisions that make the most effective colorectal cancer prevention and treatment available to all; and for increased awareness that colorectal cancer is preventable, treatable, and beatable. |
| Hereditary Colon Cancer Association HCCA's mission is to promote awareness, education and prevention of hereditary colon cancer and raise awareness for the need for more research to find better treatments for those who are at risk and currently have a hereditary colon cancer. | |
| Canavan Disease | Canavan Foundation, The Canavan disease (CD) is a relatively rare, but always fatal, inherited, degenerative brain disorder that primarily affects children of eastern and central European Jewish descent, which includes about 90 percent of the Jews in America. It is estimated that one in 40 Ashkenazi Jews is a of the Canavan gene. Currently, there is no cure for the disease, which usually becomes apparent when the infant is three to nine months old. Symptoms vary, but generally include rapidly increasing head circumference, lack of head control, reduced visual responsiveness and abnormal muscle tone such as stiffness or floppiness. Children with Canavan disease cannot crawl, walk, sit or talk. Over time they may suffer seizures, become paralyzed, mentally retarded or blind and have mess swallowing. Although hearing usually remains a functioning sense, deafness may also result. Most children do not live past age 10. |
| National Tay-Sachs & Allied Diseases Association NTSAD is dedicated to the treatment and prevention of Tay-Sachs, Canavan and related genetic diseases, and to providing information and support services to individuals and families affected by these diseases, as well as the public. Strategies for achieving these goals include research, family services, genetic screening, public and professional education and advocacy | |
| Cardiomyopathy | Cardiomyopathy Association (UK) Cardiomyopathy occurs when the heart becomes abnormally enlarged, thickened and/or stiffened due to a number of factors. As a result, the enlarged heart is weakened and less able to pump enough blood to meet the body's oxygen needs. |
| Carpal Tunnel Syndrome | Carpal Tunnel Syndrome Support Group. Message Board Forum from Daily Strength. |
| Carpal Tunnel Syndrome Forum. From eHealth. Message board forum. | |
| Carpal Tunnel Syndrome "Carpal Tunnel Syndrome happens when the median nerve, which goes from the forearm into the hand, becomes squeezed at the wrist. Carpal Tunnel Syndrome can occur through injury, pregnancy, rheumatoid arthritis, or other conditions that can irritate the ligaments or tendons within the carpal tunnel to the extent that they become swollen, and compress the nerve. Some Carpal Tunnel Syndrome cases are suspected to be caused by repetitive motion over a long period of time, such as typing. " | |
| Celiac Disease | Celiac Disease Foundation A lifelong autoimmune intestinal disorder, found in individuals who are genetically susceptible. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. |
| Celiac Sprue Association CSA/USA CSA is a member-based support organization dedicated to helping individuals with celiac disease (CD) and dermatitis herpetiformis (DH) and their families worldwide through information, education and research. | |
| National Foundation for Celiac Awareness NFCA, a national organization, is affiliated with the leading researchers in the US who are working toward this goal. The Foundation will support collaboration and partnership among scientists and institutions to optimize research potential. We have created an expert panel and competitive grant-making process to fund cutting edge research in the diagnosis and treatment of the disease. | |
| 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. | |
| Cerebral Palsy | United Cerebral Palsy (UCP) is the leading source of information on cerebral palsy and is a pivotal advocate for the rights of persons with any disability. As one of the largest health charities in America, the UCP mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network. |
| Hemi-Kids Foundation Hemi-Kids is a support group where parents of children who have hemiplegia or hemiplegic cerebral palsy share support and information. Hemiplegic Cerebral Palsy is one type of cerebral palsy affecting one side of the body resulting from disease or injury to the motor centers of the brain. | |
| Cervical Cancer | National Cervical Cancer Coalition The National Cervical Cancer Coalition (NCCC) founded in 1997, is a grassroots nonprofit organization dedicated to serving women with, or at risk for, cervical cancer and HPV disease. |
Support Groups Ch to Cl
"Ch" through "Cl"
| Charcot-Marie-Tooth Disease | Charcot-Marie-Tooth Association CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function. |
| CHARGE Syndrome | CHARGE Syndrome Foundation CHARGE association (or syndrome) is an acronym referring to children with a specific pattern of birth defects. The acronym is: "C" for coloboma, "H" for heart defects, "A" for atresia choanae, "R" for retardation of growth and development, "G" for genitourinary problems, and "E" for ear abnormalities. A severe case with major developmental delay and growth retardation has a poor prognosis while one with surgically correctable malformations may lead a happy, healthy life. |
| Charley Horses (See "Cramps") | |
| CHF – Chronic Heart Failure (see Heart Failure) | |
| Cholecystitis | 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. |
| Arnold Chiari Malformation | World Arnold Chiari Malformation Association Chiari malformations are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brainstem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. The major symptoms are headaches and neck pain. Most commonly the other symptoms confirmed to be Chiari related are: dizziness, vertigo, loss of balance visual disturbances, palpitations, sleep apnea, ringing in the ears, difficulty swallowing, impaired fine motor skills, chronic fatigue, muscle weakness and tingling of the hands and feet. |
| Cloaca | Pull-thru Network The Pull-thru Network is a volunteer-based organization dedicated to providing education, information, support and advocacy for those individuals, and the families of those individuals, who are affected by any congenital anorectal, colorectal or urogenital disorder and any of the variety of related diagnoses. |
| Chiari | Syringomyelia Alliance Project The symptoms of SM are numerous and a person may have various combinations of different symptoms. Symptoms tend to develop slowly, although sudden onset may occur with coughing and straining. Some common symptoms include: loss of sensitivity, especially to hot and cold, muscle weakness and spasticity, motor impairment, loss of bowel and bladder control, as well as osteoporosis and scoliosis. The majority of patients suffer from headaches and chronic pain. |
| Choledochal Cyst | 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. |
| Chorea | 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. |
| Choreoathetosis | 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. |
| Chronic Fatigue Syndrome | ChronicFatigueSupport.com Imagine feeling exhausted after walking two blocks, having chronic sore throats and muscle and joint pain. Imagine your head feels stuffed with wet sand and when you try to read, words swim on the page. Imagine feeling heavy and sluggish rather than rested after a night's sleep. And imagine that these ailments last for years. These are some of the symptoms of chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome or myalgic encephalomyelitis, a serious and disabling illness. |
| ChronicFatigueTreatments.com Message board forum | |
| 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. | |
| National ME/FM Action Network is a Canadian organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) 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. | |
| Chronic Renal Insufficiency | 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. |
| Chromosome Disorders | Rare Chromosome Disorder Support Group (UK) You may have been given a diagnosis or indication of a chromosome disorder by a geneticist or other medical professional and they may have used a medical term which is unfamiliar to you. So to help you decide if Unique is the appropriate organisation for you, we thought it would be useful to describe the different categories of rare chromosome disorder. Rare chromosome disorders can be grouped as structural disorders, numerical disorders and other miscellaneous disorders. |
| Citrullinemia | Save Babies Through Screening Foundation, Inc. Save Babies Through Screening Foundation is a national nonprofit public charity run by volunteers. Its mission is to improve the lives of babies by working to prevent disabilities and early death resulting from disorders detectable through newborn screening. Without proper screening affected children will likely suffer mental retardation, physical disability or even death. Most affected children can lead normal, healthy lives when diagnosed and started on treatment early. |
| Cleft Palate | American Cleft Palate-Craniofacial Association The Cleft Palate Foundation (CPF) is a non-profit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects. It was founded by the American Cleft Palate-Craniofacial Association in 1973 to be the public service arm of the professional Association. |
| 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. | |
Support Groups Cm - Cz
"Cm" through "Cz"
| Colitis | Colitis Foundation Ulcerative colitis is an inflammatory disease of the colon and rectum. Ulcerative colitis may involve a larger portion of colon or even the entire colon. The rectum is almost always inflamed at the onset of this illness. Also, colitis is continuous and not patchy-(in laymen terms)-It stays where it is and doesn't manifest itself in one place then another. If its located in the rectum, then that's where it will stay. If it is the rectum and sigmoid colon which is infected, then only these two places will contain the disease. |
| National Asso. for Colitis and Crohn's Disease (UK) The National Association for Colitis and Crohn's Disease brings together people of all ages who have Ulcerative Colitis or Crohn’s Disease, their families and the health professionals involved in their care. These two illnesses are both forms of Inflammatory Bowel Disease. | |
| Color Blindness | 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. |
| Colorectal Cancer | Colon Cancer Alliance (CCA) Colorectal Cancer is the second leading cancer killer trailing only lung cancer in annual US cancer deaths. The American Cancer Society estimates that in United States 148,610 of colorectal cancer will be diagnosed in 2006 and 55,170 deaths will occur. Fortunately, colorectal cancer is easily detectable with screening techniques that can catch the cancer when it is still treatable. |
| Speaking Up About Colorectal Cancer "Don't be shy about colorectal cancer. Be part of the cure by volunteering and donating to those working to stop this disease. Learn more about how to stay healthy now, and how to be able to detect this cancer in it earliest, most treatable stages if necessary." | |
| Coma | Coma Recovery Association Our purpose is to help families of coma and head injury survivors by providing information and referrals, enabling them to make informed choices regarding treatment, rehabilitation and socialization alternatives as well as support from others who struggle with similar concerns. |
| Coma Waiting Page We provide information About Brain Injury: Intracranial Pressure, Coma, The Rancho Los Amigos Scale, Neurosurgery, Brain Anatomy, Brain Functions and Pathology, and a complete Glossary of terms you may encounter. | |
| Congenital Heart Defect | Congenital Heart Defects.com Congenital heart defects are responsible for more deaths in the first year of life than any other birth defects, the National Institutes of Health reports. This site is devoted to providing information to members of the world-wide congenital heart defect community. |
| Congenital Heart Information Network C.H.I.N. is a national organization that provides reliable information, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them | |
| Kids with Heart National Association for Children's Heart Disorder Our organization was formed in 1985 with the main mission of providing support, information, and education for the families of the children living with congneital heart defects and to promote public awareness of the issues that these families live with on a day to day basis. | |
| Adult Congential Heart Association The Adult Congenital Heart Association (ACHA) is a nonprofit organization which seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community. | |
Congestive Heart Failure (CHF)
Also see |
Understanding Heart Disease. "Heart failure is a condition in which the heart can't pump enough blood throughout the body. Heart failure does not mean that your heart has stopped or is about to stop working. It means that your heart is not able to pump blood the way it should." |
| Heart Failure Support Group. "Congestive heart failure, also called congestive cardiac failure or just heart failure, is a condition that can result from any structural or functional cardiac disorder" | |
| Congestive Heart Failure. "Despite its name, “congestive heart failure” doesn’t refer to a condition in which the heart suddenly fails or stops. Instead, it refers to a more gradual decline in the heart’s ability to pump blood efficiently. While the heart continues to pump, the blood flow out of the heart slows, causing blood to back up in the veins and fluid to build up (congest) in tissues throughout the body." | |
| Cooley's Anemia | Cooley's Anemia Foundation This information is for patients and their families, medical personnel, donors, Foundation volunteers, and anyone interested in learning about Cooley's Anemia and other forms of the genetic blood disorder, thalassemia. |
| Conduct Disorders | National Mental Health Association Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives. |
| Cornelia de Lange Syndrome | Cornelia de Lange Syndrome Foundation Cornelia de Lange Syndrome , a congenital syndrome, is a disorder that causes a delay in physical, intellectual, and language development. The vast majority of children with CdLS are mentally retarded, with the degree of mental retardation ranging from mild to severe. Reported IQ's from 30 to 85. The average IQ is 53. The head and facial features include small head size, thin eyebrows which often meet at the midline, long eyelashes, short upturned nose, thin downturned lips, low set ears and high arched palate or cleft palate. Other characteristics may include language delay, even in the most mildly affected, delayed growth and small stature, low pitched cry, small hands and feet, incurved fifth fingers, simian creases, and excessive body hair. Diagnosis depends on the presence of a combination of these characteristics. Many of these characteristics appear in varying degrees. In some cases these characteristics may not be present or be so mild that they will be recognized only when observed by a trained geneticist or other person familiar with the syndrome. |
| Corpus Callosum | National Organization of Disorders of the Corpus Callosum NODCC aims to enhance the quality of life and promote opportunities for individuals with disorders of the corpus callosum and raise the profile, understanding and acceptance of these disorders through research, education, advocacy and networking. |
| Corticobasal Degeneration | 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 |
| Cramps (Charley Horses) |
Night leg cramps: What causes them? "A muscle cramp is an involuntary, sustained tightening (contraction) of one or more of your muscles. It can result in intense pain and an inability to use the affected muscles." |
| Leg Cramps (From About.com) "A muscle cramp is a sudden, uncontrolled contraction of a muscle. This type of pain is most commonly experienced in the legs, and therefore often called a leg cramp or a "charley horse." " | |
| Muscle Cramps. " A muscle (or even a few fibers of a muscle) that involuntarily (without consciously willing it) contracts is called a "spasm." If the spasm is forceful and sustained, it becomes a cramp." | |
| Creutzfeldt-Jakob Disease | Creutzfeldt-Jakob Disease Foundation Prion diseases are a group of rare, invariably fatal brain disorders which occur both in humans and certain animals. They first came to public attention in the mid 1980s in the form of the BSE epidemic in the United Kingdom. BSE (bovine spongiform encephalopathy) is a prion disease in cattle. Tissue from infected animals may have contaminated cattle feed, leading to the silent spread of the BSE epidemic. |
| Many Faces of Creutzfeldt-Jakob Disease Creutzfeldt-Jakob Disease (CJD) is a horrendous infectious rapidly progressive fatal brain-deteriorating disease for which there is no treatment or cure. One strain, nvCJD, is linked to bovine spongiform encephalopathy (i.e. Mad Cow Disease) in Great Britain. CJD often escapes detection. A common misdiagnosis is Alzheimer's Disease. The personal stories on this website put a face on CJD. The stories are written by teenagers and adults. Most of the stories tell of people who have died of CJD or currently have CJD. These stories describe the symptoms and progression of the disease as well as the problems in getting it correctly diagnosed. | |
| Cri-du-chat syndrome | Cri Du Chat Syndrome Support Group Cri Du Chat Syndrome is an abnormality resulting in the deletion of part of the short arm of chromosome 5. Sometimes this syndrome is called "Cat Cry Syndrome" or "5p-" At birth, the main clinical diagnostic feature of the syndrome is a high pitched, monochromatic ‘cat-like’ cry that is always present in the new-born but may disappear with age. Other features include a round, full face (“moon face”), widely spread eyes (hypertelorism), an extra fold of skin at the inner corners of the eyes (epicanthal folds), a flattened and widened nasal bridge and ears that are positioned low on the head. Most children with CDCS will have feeding problems from birth including failure to thrive, poor sucking and slow weight gain. They may also be some medical complications but these will not affect every child and are not frequent. |
| 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. | |
| Crohn's Disease | Crohn's and Colitis Foundation of America A nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. When you or your loved one is first diagnosed with inflammatory bowel disease, you probably feel overwhelmed. |
| Crohn's Disease Resource Center From HealingWell.com. | |
| Teens With Crohn's Disease I was first diagnosed with Crohn's Disease nearly ten years ago and, being a teenager at the time, I found it difficult to talk to others about the disease that did not have it. I created this site as a place to share stories and information - for teens, by teens - with Crohn's Disease. | |
| National Asso. for Colitis and Crohn's Disease (UK) The National Association for Colitis and Crohn's Disease (NACC) brings together people of all ages who have Ulcerative Colitis or Crohn’s Disease, their families and the health professionals involved in their care. These two illnesses are both forms of Inflammatory Bowel Disease (IBD) | |
| Paratuberculosis Awareness & Research Association (PARA)Crohn's disease is a painful, chronic, often debilitating, inflammatory disease of the intestinal tract that affects at least 500,000 Americans, and millions more worldwide. That figure is based on extremely conservative estimates. Sadly, this condition can be termed "a disease of the young" because it primarily targets young people in the prime of life, between the ages of 15 and 25. | |
| Cockayne Syndrome | Share and Care Cockayne Syndrome Network Cockayne Syndrome is a rare form of dwarfism. It is genetic and recessively inherited. Classic CS is the most common form in which the first year of life is basically normal with the onset of symptoms in the second year of life. With CS type II or early-onset CS, the symptoms are displayed within the first year. |
| Crouzon 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. |
| Cushing's Syndrome | Cushing's Help and Support Cushing's syndrome occurs when the body's tissues are exposed to excessive levels of cortisol for long periods of time. Many people suffer the symptoms of Cushing's syndrome because they take glucocorticoid hormones such as prednisone for asthma, rheumatoid arthritis, lupus or other inflammatory diseases. Symptoms vary, but most people have upper body obesity, rounded face, increased fat around the neck, and thinning arms and legs. Children tend to be obese with slowed growth rates. Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures. Most people have severe fatigue, weak muscles, high blood pressure and high blood sugar. Irritability, anxiety and depression are common. |
| Cystic Fibrosis | Cystic Fibrosis Foundation Cystic fibrosis (CF) is a life-threatening disease that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that leads to lung damage. |
| Cystic Fibrosis Support Group. "A community of patients, family members and friends dedicated to dealing with Cystic Fibrosis, together" | |
| Boomer Esiason Foundation The Boomer Esiason Foundation is a partnership of leaders in the medical and business communities joining with a committed core of volunteers to provide financial support to research aimed at finding a cure for cystic fibrosis. The Foundation works to heighten education and awareness of cystic fibrosis and to provide a better quality of life for those affected by cystic fibrosis. | |
| International Association of Cystic Fibrosis Adults (IACFA)Cystic Fibrosis Worldwide works to promote access to appropriate care and education to those people living with the disease in developing countries and to improve the knowledge of CF among medical professionals and governments worldwide. | |
| Save Babies Through Screening Foundation, Inc. Save Babies Through Screening Foundation is a national nonprofit public charity run by volunteers. Its mission is to improve the lives of babies by working to prevent disabilities and early death resulting from disorders detectable through newborn screening. Without proper screening affected children will likely suffer mental retardation, physical disability or even death. Most affected children can lead normal, healthy lives when diagnosed and started on treatment early. | |
| Cystinosis | Cystinosis Foundation Family Support Message board forum |
Support Groups "Da" through "De"
"Da" through "De"
| 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. | |
| Center for Hearing and Communication The Center for Hearing and Communication is a leading hearing center offering state-of-the-art hearing testing, hearing aid fitting, speech therapy and full range of services for people of all ages with hearing loss. Visit our offices in New York City and Florida for services that meet all of your hearing and communication needs. | |
| 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. | |
| 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 Childrem Fund The DeafBlind Children's Fund is improving the lives of deafblind children through education, awareness, and advocacy to ensure every deafblind child is given the opportunity to achieve their highest potential. | |
| 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. | |
| 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 | |
| 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. | |
| Depressive and BiPolar Support Alliance The leading patient-directed national organization focusing on the most prevalent mental illnesses. The organization fosters an environment of 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. DBSA supports research to promote more timely diagnosis, develop more effective and tolerable treatments, and discover a cure. The organization works to ensure that people living with mood disorders are treated equitably. | |
| 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. |
| Mahalo Pervasive developmental disorder (PPD) is a group of five developmental children's diseases that present as delays in socialization and communication skills. Children with PPD have problems talking, playing with others and expressing how they feel. | |
Support Groups "Di" through "Dz"
"Di" through "Dz"
| 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. | |
| Nephrogenic Diabetes Insipidus. NDI stands for Nephrogenic Diabetes Insipidus. It is a medical condition in which the kidney is unable to conserve water. | |
| Diet (see Weight Support Groups) | |
| 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 (article) 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. |
| Dysautonomia Support Groups A list of support groups for dysautonomia patients. | |
| 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 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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