Support Groups T, U, V, W, X, Y, Z

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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 March 9, 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.

Links to Support Group pages:

 

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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 "T"

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"T"

Quick Link:      Thyroid Diseases

Tardive Dyskinesia National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
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. 
Tay-Sachs Disease 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.
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.
TemporoMandibular Joint TMJ Association, Ltd., The    The TMJ Association continues to strive for its ultimate goal: the development of universal standards for safe, effective, affordable, research-based diagnostics, treatments, and prevention of TMJ diseases and disorders. We understand that patient education, advocacy, and the provision of locally accessible support systems are central to achieving that goal.
Tethered Spinal Cord 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.  
Tetrasomy Syndrome Tetrasomy/Pentasomy X Support List    As parents of children who are diagnosed with tetrasomy x and pentasomy x syndromes, we understand how essential it is for them and their families seeking support and also for educators and professionals working with the families to have access to information.
Thalassemia Berloni Foundation Against Thalassemia    The term "Thalassemia" implies a genetic disorder which is characterised by a reduced or erroneous production of haemoglobin, the respiratory pigment contained in the red cells. It is today possible to cure the disease by way of performing bone marrow transplant using a compatible donor and in this way replacing diseased cells whit healthy ones.  
Iron Disorders Institute    An iron disorder occurs when iron is out of balance in the human body.
Thrombocytopenia TAR Syndrome    The main characteristics of TAR Syndrome are low platelet values, the absence of radii bones (arm) and other skeletal abnormalities. Other clinical features are cardiac abnormalities and cow's milk allergies or intolerance. These children also tend to have elevated white blood cells.
Thrombosis and Thrombophilia National Alliance for Thrombosis and Thrombophilia   The National Alliance for Thrombosis and Thrombophilia is committed to preventing and treating the array of major health problems caused by blood clots,                 
Thyroid Diseases Light of Life Foundation   Thyroid cancer is a tumor or growth located within the thyroid gland. Thyroid cancer is uncommon, accounting for only about 1 out of every 100 cancers in the United States. The outlook with treatment is excellent – most thyroid cancers can be totally removed with surgery.
American Thyroid Association, The     The ATA provides outstanding leadership in thyroidology by promoting excellence and innovation in clinical care, research, education, and public policy.
ThyCa: Thyroid Cancer Survivors' Association    This website has been created and is maintained by thyroid cancer survivors.  We have been developing a network of services that link thyroid cancer survivors and health care professionals around the world.  Our mission is simple: to Educate, to Participate, to Communicate, and to Support Research, for a future free of thyroid cancer.
American Foundation of Thyroid Patients    The most common problems that develop in the thyroid include:  Hypothyroidism , Hyperthyroidism, Goiter, Thyroid Nodules,  Thyroid Cancer,  and Thyroiditis.
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.
Tics 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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Tinnitus 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. ATA provides tinnitus information, urges governmental and private organizations to support public policies impacting hearing issues, funds the nation’s brightest researchers, and facilitates self-help groups around the country.
Tinnitus Online Community    Some of the best help comes from other people who've been there.  These pages are an attempt to aid online communication between people with tinnitus.
Tourette Syndrome Joshua Center    The Joshua Child and Family Development Center is a non-profit organization that supports programs designed to improve the lives of individuals and families living with Tourette Syndrome, Asperger Syndrome, Obsessive Compulsive Disorder and their Associated Disorders through research, education, social and clinical programs.      
Tourette Syndrome Association    Our mission is to identify the cause of, find the cure for and control the effects of Tourette Syndrome.  We offer resources and referrals to help people and their families cope with the problems that occur with TS.  We raise public awareness and counter media stereotypes about TS.  Our membership includes individuals, families, relatives, and medical and allied professionals working in the field.
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. 
Tracheo-Oesophageal Fistula Tracheo-Oesophageal Fistula and Oesophageal Atresia Support Group TOFS is a charity dedicated to supporting the families of children born unable to swallow.  Through our website, we aim to provide good quality information, signposting to useful resources and help members to make contact with each other.
Traumatic Stress Sidran Foundation     Because many people underestimate the developmental, emotional, psychological, and spiritual injuries that can result when people experience or witness traumatic events, Sidran Traumatic Stress Institute helps people understand, recover from, and treat traumatic stress (including PTSD), dissociative disorders, and co-occurring issues, such as addictions, self injury, and suicidality.      
Tremor 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.
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. 
Treacher Collins Treacher Collins Connection    Treacher Collins syndrome is a genetic craniofacial syndrome that is characterized by a range of distinctive facial anomalies.  The main characteristics of TCS are downward slanting eyes, small lower jaw, and malformed or missing ears.  These anomalies cause hearing, breathing, and eating problems.  Individuals and families also struggle with the psychological aspects of having a facial difference. 
Treacher Collins Family Support Group (UK) The Treacher Collins Family Support Group was set up in 1987 by a group of parents to meet the needs of families and individuals, to offer support and friendship to families and individuals, to seek to gain greater knowledge and understanding of Syndrome, to offer advice to families and individuals on various aspects of the syndrome, and to help develop a clear policy on areas such as facial surgery, hearing aids and genetic counselling.
Treacher Collins Teens This is a chance for you to chat with other people with TC.You can talk about anything, games, events, jokes or any interests you have.   
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.
Trichotillomania National Mental Health Association    Mental Health America is the country’s leading nonprofit dedicated to helping ALL people live mentally healthier lives.
Trigeminal Neuralgia Trigeminal Neuralgia Association    Trigeminal Neuralgia is a pain that is described as among the most acute known to mankind.  TN produces excruciating, lightning strikes of facial pain, typically near the nose, lips, eyes or ears.
Trigeminal Neuralgia: You're Not Alone    A collection of support groups and information links.
Triple X Syndrome Triple X Support Group   A few of the most common difficulties faced are:- a slightly lower I.Q. level, varying from 10-15 points below the average, learning difficulties, speech delay, co-ordination problems both gross and/or fine motor skills, emotional behavioural problems, taller in stature than siblings and hypotonia (low muscle tone). 
Trisomy Trisomy 18 Support   At conception, 23 chromosomes from the father and 23 chromosomes from the mother combine to create a baby with 46 chromosomes in each cell, two of each type. Each chromosome holds a particular "position" in the cell and carries certain genetic material. A trisomy occurs when a baby has three chromosomes in one position instead of the normal two.  Trisomy 18 is also called Edwards syndromeand occurs in about 1:3000 live births. Trisomy 18 is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies live at least one year.
T18 Moms     This site is dedicated to families coping with a diagnosis of Trisomy 18, Edwards syndrome.
Trisomy Online    Trisomy Online is a free email based support group that was formed in 1997 for families and professionals whose lives have been touched by the diagnosis of a trisomy condition.
Support Organization for Trisomy 13 and 18     SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in issues and decisions surrounding Trisomy 18, 13 and related chromosomal disorders. Support is provided during prenatal diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision - in alliance with a parent / professional partnership.   
KS&A      KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.  We endeavor to fulfill this mission of satisfying unmet needs and improving the lives of individuals and families affected by X and Y chromosome aneuploidies including 47XXY, Klinefelter syndrome, Trisomy X, XYY syndrome and associated conditions.      
Living with Trisomy 13    This site focuses on bringing together the families of children diagnosed with Patau Syndrome. Also called Trisomy 13 Syndrome, having a third (extra) number 13 chromosome, occurs about 1 in 5,000 live births. Trisomy 13 children have multiple abnormalities. Some include heart defects, brain defects, cleft lip, cleft palate. The most severe are visual abnormalities, omphalocele, proboscis and holoprosencephaly
Trisomy 9 International Parent Support    Trisomy 9 refers to the number 9th chromosome being affected, though due to being so rare it has not yet been given another name.
Tuberous Sclerosis Tuberous Sclerosis Alliance   The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis while improving the lives of those affected. (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC).
Tuberous Sclerosis Association, The (UK)      The Tuberous Sclerosis Association, the UK charity that supports sufferers, promotes awareness, and seeks the causes and best possible management of Tuberous Sclerosis
Tuberous Sclerosis International (TSI)   Tuberous Sclerosis (Epiloia or Bourneville's disease) is a common genetic condition which produces abnormal growths in the body from birth throughout life. It can severely affect development and health.
Turner's Syndrome Turner's Syndrome Society of the United States    Turner syndrome (TS) is a chromosomal condition that describes girls and women with common features that are caused by complete or partial absence of the second sex chromosome.   TS occurs when one of the two X chromosomes normally found in females is missing or contains certain structural defects. 
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.
Twin to Twin Transfusion Synd. Twin to Twin Transfusion Syndrome Foundation     Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.       
International Institute for the Treatment of Twin to Twin Transfusion Syndrome      Twin Transfusion Syndrome occurs when twins (or other multiples) share a single placenta that contains blood vessels which connect the twins. These inter-connections may cause one baby (the recipient) to get too much blood, thereby overloading his or her cardiovascular system. This baby may die from heart failure, while the other baby may die from the loss of blood.
Twin Hope   Twin to Twin Transfusion Syndrome is a condition that may occur in identical twins or higher multiple pregnancies. The disease results when blood passes disproportionately between one baby and another through connecting blood vessels in their shared placenta.
Tyrosinemia Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support.
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Support Groups "U - V"

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"U" - "V"

Quick Links:     Veteran Issues        Vision & Eye Diseases

Urea Cycle Disorder National Urea Cycle Disorder Foundation    The National Urea Cycle Disorders Foundation is dedicated to the identification, treatment and cure of urea cycle disorders. A urea cycle disorder is a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream. The urea cycle involves a series of biochemical steps in which nitrogen, a waste product of protein metabolism, is removed from the blood and converted to urea. Normally, the urea is transferred into the urine and removed from the body. In urea cycle disorders, the nitrogen accumulates in the form of ammonia, a highly toxic substance, and is not removed from the body resulting in hyperammonemia. Ammonia then reaches the brain through the blood, where it causes irreversible brain damage, coma and/or death.
Urticari International Chronic Urticari Society (ICUS)    Chronic urticaria is a type of hives, also called nettle rash, that lasts for more than six weeks.
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Vascular Diseases Vascular Disease Foundation    The Vascular Disease Foundation is the only multidisciplinary national public organization focused on vascular diseases with the sole purpose of providing public education and improving awareness about vascular diseases. The mission of the VDF is:to reduce death and disability from vascular diseases and improve vascular health for all Americans.
Vasculitis The Johns Hopkins Vasculitis Center     “Vasculitis” is a general term for a group of diseases that involve inflammation in blood vessels. Vessels of all sizes may be affected, from the largest in the body (the aorta) to the smallest in the skin (capillaries). The size of blood vessel affected varies according to the specific type of vasculitis.
Vasculitis     Vasculitis is inflammation of blood vessels. In individuals with vasculitis, inflammation damages the lining of affected blood vessels, causing narrowing, the formation of blood clots (thrombosis), and/or blockage. As a result, there may be restriction of oxygenated blood supply to certain tissues, potentially resulting in pain, tissue damage, and, in some cases, malfunction of certain affected organs.  
Velo-cardio-facial Syndrome Velo-cardio-facial Syndrome Educational Foundation            Velo-cardio-facial syndrome has had over 180 clinical features described. Probably no individual with VCFS has all 180 findings, but it is also true that no one with the syndrome has only one or two of the findings. Many of the anomalies associated with the syndrome are not apparent at birth, or even in early childhood, primarily because they are behavioral, or in some cases because they are "silent" anomalies, meaning that they are not symptomatic. 
VATER TEF VATER International Support Network   VACTERL or VATER association is an acronym used to describe a series of characteristics which have been found to occur together. V stands for vertebrae, which are the bones of the spinal column. A stands for imperforate anus or anal atresia, or an anus that does not open to the outside of the body. C is added to the acronym to denote cardiac anomalies. TE stands for tracheoesophageal fistula, which is a persistent connection between the tracheaand the esophagus. R stands for renal or kidney anomalies. L is often added to stand for limb anomalies. Babies who have been diagnosed as having VACTERL association usually have at least three or more of these individual anomalies. There is a wide range of manifestation of VACTERL association so that the exact incidence within the population is not exactly known. What we offer is long term support to parents and families, information about the different birth defects, the operations to correct them, the problems before and after surgery, coping skills while you are on the roller coaster, the many problems before and after you bring your child home, a sense of humor to let you know that you are not alone and you are not the only one to feel what you feel and to give you some breathing room to cry, vent your frustrations about your life and your babies situation, the pain and anguish that you see when they are hooked up to all the tubing and machines and to laugh about your life, and smile about your situation after you pick yourself up off the floor to face another day.
Vertigo I Am Dizzy    There are many causes of dizziness which can only be diagnosed by your doctor or other medical specialists, this site deals specifically with those who have a condition called Benign Paroxysmal Positional Vertigo or Central Positional Vertigo
Vestibular Disorders 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.  
Veteran Issues Blinded Veterans Association    Our mission is to promote the welfare of blinded veterans so that, notwithstanding their disabilities, they may take their rightful place in the community and work with their fellow citizens toward the creation of a peaceful world and to preserve and strengthen a spirit of fellowship among blinded veterans so that they may give mutual aid and assistance to one another.
Disabled American Veterans is an organization of disabled veterans who are focused on building better lives for disabled veterans and their families.  The organization accomplishes this goal by providing free assistance to veterans in obtaining benefits and services earned through their military service. It is fully funded through its membership dues and public contributions. It is not a government agency and receives no government funds. 
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.
CHAMPVA - Department of Veterans Affairs - Health Administration Center            CHAMPVA is a health care benefits program for the spouse or widow(er) and for the children of a veteran.   
Military Homefront  Military HOMEFRONT is the central, trusted, up-to-date source for Service members and families to obtain information about all Quality of Life programs and services. From this site, you can type in "Military Severely Injured Center" in the "Search" to find information about the 24-hour-a-day Military Severely Injured Center which provides personalized assistance for all severely injured service members and their families. It helps veterans deal with issues and needs related to medical care and rehabilitation; education, training and job placement; personal mobility and function; home, transportation and workplace accommodations; personal, couple and family relationships; financial resources; and other aspects of their lives.       
Military Officers Association of America    This site contains resources ranging from member services to assistance with personal military-related matters, as well as a variety of related links   
U.S. Veterans Resource    Website of the U.S. Veterans Resource which contains a wide variety of information and links of interest to veterans and their families, including a listing of state and county Veterans Service Offices.          
VA Rehabilitation Research & Development Program   Website of the Department of Veterans Affairs Rehabilitation Research & Development Program. 
Wounded Warriors  Wounded Warriors helps to provide items of comfort for wounded troops at military hospitals worldwide.
TRICARE  A regionally managed health care program for active duty and retired members of the uniformed services, their families, and survivors.
Military Order of the Purple Heart The Military Order of the Purple Heart is a community of combat wounded veterans. We’re proud to have served our country and serve yet today.  Our mission is to promote patriotism, service to all veterans, and service to our communities through our programs and support from our dedicated members. 
Society of Military Widows  SMW was founded in 1968 to serve the interests of women whose husbands died while on active military duty, of a service-connected illness, or during disability or regular retirement from the armed forces.
Veteran Quality of Life Access Network Inc  Our organization will enable veterans to get first hand information on how to apply for basic needs, i.e. welfare, food stamps, pension, social security, etc. We will also provide assistance for locating housing, jobs, schools and much more. The organization will treat all veterans and their families equally and at the same time give them the  opportunity to help others by volunteering their experiences. If you were ever a part of the military, you would know that communication plays a major part in life, so let us know how we can better serve you by emailing us. We will be dealing with many issues such as V. A. claims, education, community involvement. jobs, re-habilitation  and much more.  
Paralyzed Veterans Of America     Paralyzed Veterans of America works to maximize the quality of life for its members and all people with SCI/D as a leading advocate for health care, SCI/D research and education, veterans’ benefits and rights, accessibility and the removal of architectural barriers, sports programs, and disability rights.
Veteran - Rehabilitation Atlanta VA Rehab R&D Center    Website of the Atlanta VA Rehab R&D Center with information for aging Veterans with disabilities and those acquiring disabilities as they age, including a variety of interesting links.
Veteran - Housing Army Fisher Houses    Located within walking distance of the hospital, Army Fisher Houses provide a temporary home to families undergoing medical care at nine locations across the United States and Germany. "providing comfort, caring and compassion ...beyond the call of duty"
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Vision & Eye Diseases American Foundation for the Blind’s mission is to enable people who are blind or visually impaired to achieve equality of access and opportunity that will ensure freedom of choice in their lives. 
The National Federation of the Blind is the largest and most influential membership organization of blind people in the United States.  The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence.  It is the leading force in the blindness field today and the voice of the nation's blind.  
Foundation Fighting Blindness    The urgent mission of The Foundation Fighting Blindness, Inc. is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.
American Nystagmus Network   Nystagmus is an involuntary eye movement which usually results in some degree of visual loss. The degree and direction of eye movement, amount of visual loss and resulting impairment varies greatly from person to person.
International Blind Sports Association (IBSA) Our goal is the full integration of the blind and visually impaired through sport at all levels.
seeAbility     Our purpose is to enable individuals who are blind or partially sighted with additional disabilities to achieve their full potential. SeeAbility enables people to realize opportunities, make choices and enhance their quality of life.
Lighthouse International     Lighthouse International is a leading organization that helps people of all ages who are at risk for, or are experiencing, vision loss. We provide services, research and education, and advocate to help people with low vision and blindness live safe, independent and productive lives.   
Unite For Sight   Unite For Sight empowers communities worldwide to improve eye health and eliminate preventable blindness. Local and visiting volunteers work with partner eye clinics to provide eye care in communities without previous access, with the goal of creating eye disease-free communities. Additionally, vision screening and education programs are implemented worldwide by volunteers working in ninety chapters established at universities in North America, Africa, Asia, and Latin America.         
American Council of the Blind is the nation's leading membership organization of blind and visually impaired people.
RP International      Millions of people find they are losing eyesight to "incurable," "hopeless," and "rare" eye diseases. It's hard to believe that as we approach the year 2000 these statements are still on the lips of ophthalmologists as they break the sad news to people each and every day. RP seeks the realities and possibilities within reach of medical science to change the terrible hopelessness that has been a way of life in the diagnosis and treatment of previously "incurable" eye diseases. It appears among scientists that the rebuilding of damaged retinas could become a possibility as medical science daily embraces miracles in every direction of medical research through the high-tech advances of the 20th century.
National Association for Visually Handicapped            NAVH is the only nonprofit health organization in the world solely dedicated to providing assistance to the partially sighted. We are committed to ensuring that impaired vision does not result in impaired life. Our mission is to help the "hard of seeing," worldwide cope with the psychological effects of visual impairment and to provide low vision services, visual aids and training to anyone in need of these services.
Blinded Veterans Association    Our mission is to promote the welfare of blinded veterans so that, notwithstanding their disabilities, they may take their rightful place in the community and work with their fellow citizens toward the creation of a peaceful world and to preserve and strengthen a spirit of fellowship among blinded veterans so that they may give mutual aid and assistance to one another.
American Health Assistance Foundation   AHAF is one of America's leading supporters of scientific and medical investigations into Alzheimer's Disease, Glaucoma, Macular Degeneration, Heart Disease, and Stroke.
National Association for Parents of the Visually Impaired         NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities. NAPVI provides leadership, support, and training to assist parents in helping children reach their potential.
Vision of Children Foundation     More than 20 babies are born each day into certain blindness. Some will never know their mother's smile, while others grow up with the knowledge that they will lose sight before the end of their teens
Vision World Wide   We provide invaluable information, education, guidance, support and consumer protection, not only to the blind and visually impaired, but to the many professionals (medical, social and technical) who serve them.
Blind Horseshoe Pitchers Association   This website is for any sighted, visually impaired or blind individual who wants to be involved in the advancement of horseshoe pitching for the visually impaired and blind. We need sighted coaches and pitch partners to assist us
Vitiligo Vitiligo Support            Vitiligo Support International is the largest vitiligo organization in the world. Vitiligo (also called "leukoderma") is a common skin disease in which there is loss of pigment from areas of the skin resulting in irregular white spots or patches.  The skin has normal texture. Vitiligo may appear at any age. Although it is a progressive condition, many people experience years or decades without developing new spots. 
American Vitiligo Research Foundation     This website was created to help vitiligo patients and their families. The AVRF strives to raise awareness, educate, and help patients live with a greater understanding and acceptance of vitiligo.
Von Hippel-Lindau Syndrome VHL Family Alliance   Dedicated to improving diagnosis, treatment, and quality of life for individuals and families.   Von Hippel-Lindau syndrome is an inherited multi-system disorder characterized by abnormal growth of blood vessels. While blood vessels normally grow like trees, in people with VHL little knots of blood capillaries sometimes occur. These knots are called angiomas or hemangioblastomas. Growths may develop in the retina, certain areas of the brain, the spinal cord, the adrenal glands and other parts of the body.
von Willebrand's Disease Matt Klimshuk/von Willebrand's Disease    Von Willebrand's Disease is the most common genetic disorder in the world, 100 times more common than hemophilia! The illness is linked to a missing blood factor which assists with the clotting of blood. Usually, vWD shows itself by spontaneous hemmorhages under the skin, prolonged and/or easy bruising, and prolonged bleeding from even small cuts. Most internal hemmorhages occur in crisis joints - a joint (knee, elbow, etc.) that usually will be the first to bleed. Time for the bruising and bleeding to stop depends on the amount and quality of vWF in the blood system. Rough sports without adequate protection are not advised. Take care when visiting the dentist.     
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Support Groups "W"

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"W"

Waldenstrom's Macroglobulinemia International Waldenstrom's Macroglobulinemia Foundation Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells. 
WAGR Syndrome Reaching Out: WAGR/Aniridia Network     WAGR is an acronym which stands for the following: (W)ilms' Tumor, (A)niridia, (G)enitourinary anomalies/gonadoblastoma and Mental (R)etardation.  A combination of 2 or more of these symptoms must be present for an individual to be diagnosed with WAGR Syndrome.     
West Syndrome West Syndrome Support Group In 90 per cent of children with the condition, infantile spasms occur in the first year of life, typically between 3 - 6 months old. Often, to begin with, the attacks are brief, infrequent and not typical, so it is quite common for the diagnosis to be made late. Frequently, because of the pattern of attacks and the cry that a child gives during or after an attack, they are initially thought to be colic.   
Williams Syndrome Williams Syndrome Association   The WSA is the only group in the US devoted exclusively to improving the lives of individuals with Williams syndrome and their families. Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems. The majority of individuals with this have some type of heart or blood vessel problem. Young children with Williams syndrome often have low muscle tone and joint laxity. As the children get older, joint stiffness may develop.
Wilson's Disease Wilson's Disease Association International     It is important to diagnose Wilson's Disease as early as possible, since severe liver damage can occur before there are any signs of the disease. Individuals with Wilson's Disease may falsely appear to be in excellent health.  Wilson's disease causes the body to retain copper. The liver does not release copper into bile as it should. As the intestines absorb copper from food, the copper builds up in the liver and injures liver tissue. Eventually, the damage causes the liver to release the copper directly into the bloodstream, which carries the copper throughout the body. The copper buildup leads to damage in the kidneys, brain, and eyes. If not treated, Wilson's disease can cause severe brain damage, liver failure, and death.
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.
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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Xeroderma Pigmentosum Xeroderma Pigmentosum Family Support Group                        Xeroderma Pigmentosum is a rare inherited disease affecting both males and females that causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, XP can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of people with XP also develop progressive neurological disease. Symptoms of the condition include: early onset of freckling (before age 2) especially on sun exposed skin, severe sun burns after only a short duration of sun exposure or exposure to ultra-violet lights. Some people with XP may develop sun burns even in shady areas. In the past, many people with XP did not survive to the 4th decade of life. Now, however with better methods of identifying and treating the skin cancers and shielding against ultraviolet radiation, people with XP may be able to have a much longer life.
Xeroderma Pigmentosum Society, Inc.    The XP Society offers information, support, advocacy, and protection to the XP patient and the family and caregivers while promoting research for a cure.
X-Linked Hypophosphatemia The XLH Network    We are a worldwide patient support organization for people living and dealing with X-Linked Hypophosphatemia also known as Vitamin D-Resistant Rickets. We are dedicated to understanding XLH in terms of support, research and developing new treatments. XLH primarily affects bone and tooth development. The result is that the bone and teeth are not as well mineralized as they should be. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, elevated alkaline phosphatase (mostly in children) and low blood phosphorus levels due to phosphate wasting. Intact parathyroid hormone can also be mildly elevated even before treatment.       
XXYY Syndrome XXYY Project    Males with xxyy have two x and two y sex chromosomes, instead of one each.  XXYY is sometimes considered a variant of Klinefelter Syndrome and variations in girls are called Turner Syndrome.
Zellweger Syndrome Daily Strength DailyStrength.org is the most comprehensive health network of people sharing their advice, treatment experiences, and support.
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