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Experiences with
Hoyeraal-Hreidarsson syndrome
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Communities
33 public communities
Gorlin Syndrome Group
221 members
The Gorlin Syndrome Group is a support network offering guidance and information to individuals, their families and carers whose lives are affected by Gorlin Syndrome (also known as Nevoid Basal Cell Carcinoma Syndrome). The group is organised by individuals affected by Gorlin Syndrome and their families, with support from medical advisors. Our aims and objectives are: to offer guidance and information to individuals, their carers, family and friends with Gorlin syndrome the advancement of the education of the medical profession into Gorlin syndrome and its implications for the family to promote research into the causes, effects, treatment and management of Gorlin syndrome.
Sweet's Syndrome UK
486 members
Sweet's Syndrome UK is a Derbyshire-based (formerly Cardiff-based) patient group that helps those with the rare autoinflammatory condition and neutrophilic dermatosis, Sweet's syndrome. Information provided is evidence-based and supported by medical research.
Sjogren's Support
727 members
This community is a safe space for members to chat about their experience with Sjogren's syndrome.
Lynch Syndrome UK
117 members
Lynch syndrome (LS) is a genetic disorder that causes an increase in certain cancers at an earlier age than usual. There about 12 cancers that can be affected, the commonest are large bowel cancer and rectal cancer. After that, the next most common is womb cancer. LS tends to run in families so it is usual to find than people in different generations have one of these cancers. Find out more on our website lynch-syndrome-uk.org
The Australian Sjögren's Syndrome Association
2,452 members
The Australian Sjogren's Syndrome Association Inc. was incorporated in Parramatta in 2001, although due to illness of the founder, the association did not commence trading until June 2004 in Mullumbimby, Northern NSW. The name of the founder and president is Ms Beverly Norton. Background The Association was started by Beverly Norton who, in May 2000, was diagnosed with Sjogren's, a disease that Australian doctors knew very little about. Sjogren's (pronounced show-grins) syndrome is a chronic, autoimmune disorder in which the body's immune system mistakenly attacks its own moisture producing glands. The specific causes of Sjogren's syndrome are not known, but multiple factors are probably involved. These include genetics, viruses, hormones or a combination of all of these. It is critical that it is identified quickly and treated otherwise it can be fatal.
Down's Syndrome Support
324 members
We are a friendly support community for people living with or caring for someone with Down's syndrome. Join to connect with others who understand! Why not share your story today: https://healthunlocked.com/dhg/write/
Hughes Syndrome APS Forum
10,388 members
Hughes Syndrome - APS Support is a Forum that helps support people with Hughes/Antiphospholipid Syndrome and Sero-negative Hughes/APS (SN-APS), also referred to at times as STICKY BLOOD or Sludge Blood. We help people from the UK and globally. We also enhance education, awareness and research into Hughes Syndrome. Some of our members are writing books, and some already have, this does help raise awareness both with the public and medical staff. Please share your experiences, gather useful information, learn from others and don’t be afraid to ask for help if you need it. Above all please enjoy this site!
BWS Support
712 members
A community dedicated to supporting those with Beckwith-Wiedemann Syndrome (BWS), which is an overgrowth disorder.
Restless Legs Syndrome
22,014 members
Welcome to the European Alliance for Restless Legs Syndrome (EARLS) and RLS-UK forum. Learn more about us at www.earls.eu and www.rls-uk.org
Ehlers-Danlos Support UK
2,982 members
Ehlers-Danlos Support UK (EDS) assists those with Ehlers-Danlos. It is a genetic connective tissue condition that is a multi-systemic syndrome.
Dancing Eye Syndrome Support Trust
109 members
The Dancing Eye Syndrome Support Group was formed in 1988 with the principal aim of providing a link for parents of children with D.E.S. both locally and nationally. The Dancing Eye Syndrome Trust provides support and information to families of children with Dancing Eye Syndrome.
Myalgic Encephalomyelitis Community
2,053 members
Myalgic Encephalomyelitis (ME) Community is a peer support community for people who living with ME, aka chronic fatigue syndrome (CFS). Join to connect with others who understand. Share your experiences and get tips and advice from others like you. Why not introduce yourself today - healthunlocked.com/meandcfssupport/write
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