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Experiences with
Mast cell activation syndrome (MCAS)
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Communities
47 public communities
The UK Mastocytosis Support Group
573 members
The UK Mastocytosis Support Group community is for anyone with diagnosed or un-diagnosed Mast Cell Diseases or those supporting them. The UK Mastocytosis Support Group is a charity that supports people with Mast Cell Diseases including Mastocytosis and mast cell activation syndromes. We support people by informing them of various aspects of Mast Cell Diseases and testing.
Gorlin Syndrome Group
220 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.
Sickle Cell Society
2,004 members
The Sickle Cell Society is Britain’s only national charity for sickle cell disorders, an inherited haemoglobin disorder. The Sickle Cell Society was founded in 1979 by a group of patients, parents and health professionals who shared concerns about the lack of understanding of sickle cell disorders and the inadequacies of treatment. We aim to raise awareness of sickle cell disorders, push for improvements to treatment and provide advice, information and support to the sickle cell community. This community connects people living with or affected by sickle cell in the UK.
Foggy's "Invisible Illness" Support
5,569 members
With charitable donations, we are able to provide 2 Hydrotherapy sessions per week, for our paid members. We are dedicated to providing support, raising awareness and promoting positivity, for invisible conditions primarily for: Arthritic Condition's Chronic Fatigue Syndrome Chronic Widespread Pain Fibromyalgia Giant Cell Arteritis Long Covid M. E. Myalgic Encephalopathy Myofascial Pain Polymyalgia Rheumatic Condition's
Living with Sickle Cell Disease
492 members
Living with Sickle Cell Disease is a community dedicated to supporting individuals affected by sickle cell disease; whether you've been diagnosed with sickle cell disease, living with sickle cell trait or supporting a loved one. In this peer community, you can discuss, share stories, and receive support from others dealing with these conditions.
Sweet's Syndrome UK
477 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.
Small Cell Lung Cancer Support
113 members
The Small Cell Lung Cancer Support Community is a peer support network run by the GO2 for Lung Cancer: https://go2foundation.org/, the place where people impacted by small cell lung cancer can connect, learn, and find hope and support. We are focused on understanding and meeting the needs of the small cell lung cancer community from diagnosis through treatment and on to survivorship. Your needs are important – Click HERE: https://www.surveymonkey.com/r/QDFNG7R to take the Small Cell Lung Cancer Survey: Understanding Your Needs To learn more about Small Cell Lung Cancer, Click HERE: https://go2foundation.org/what-is-lung-cancer/types-of-lung-cancer/small-cell-lung-cancer/ and explore the GO2 Small Cell Lung cancer education materials, videos, and more. Through our Small Cell Lung Cancer Initiative, we have dedicated and knowledgeable staff to answer questions and provide resources to you whether you are a patient, caregiver, or loved one. If you would like personalized support, treatment information, clinical trial assistance, or if you just have questions, please call our helpline at 800-298-2436, email at support@go2.org
Sjogren's Support
725 members
This community is a safe space for members to chat about their experience with Sjogren's syndrome.
Lynch Syndrome UK
115 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
2,449 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
322 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
10,377 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!
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