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Experiences with
Sialic acid storage disorders
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Communities
40 public communities
FABED
213 members
FABED was founded in 2005 by 2 families with a total of 5 Eosinophilic Children. We are a UK based non profit Charity who strive to raise funds to further the awareness, education and support for families and professionals who deal with Eosinophilic disorders on a daily basis. We feel it is essential for families living with these disorders to be able to access support and information to aid early diagnosis and the correct medical support.
SWEDA
617 members
Having an eating disorder, or supporting someone who has, can be a distressing and bewildering experience. Somerset and Wessex Eating Disorders Association (SWEDA) offers a range of services throughout Somerset and the surrounding area.
Sleep Matters
3,720 members
A peer support community for people who struggle with sleeping problem such as insomnia, circadian rhythm disorders (jet lag), snoring and sleep apnea. Join to connect with others who understand what is like to function (or not!) without a good night's sleep.
Talk ED (eating disorders)
3,557 members
Talk ED (previously ABC) is a national UK eating disorders organisation with over 25 years of experience. We provide on-going care, emotional support and practical guidance for anyone affected by eating disorders. We support and care for those struggling personally and resource and equip parents, families, friends and professionals.
FASD Support
952 members
Foetal Alcohol Spectrum Disorders (FASD) Support is an online community dedicated to providing a safe space for all people, families and communities affected by the condition to get support, share advice and meet others who understand. This community is run by the National Organisation for Foetal Alcohol Syndrome Disorders-UK (NOFAS-UK), in partnership with a number of other members from the FASD UK ALLiance.
Acid Reflux Support
1,651 members
For more than three decades, the OPA has fought against oesophageal and gastric cancers, raising awareness, supporting patients, caregivers and their families. Whether you are in the early stages or further along in your journey, the OPA is dedicated to offering support and guidance. Did you know? There are over 65 Million people in the UK and it is estimated that over 1 in 10 people suffer from Reflux Disease. Reflux disease can have a terrible impact on a patients quality of life affecting many aspects of their everyday functioning. For many people, this can be managed effectively with lifestyle changes and/or medication prescribed by their GP such as omeprazole, lansoprazole and esomeprazole (as well as others). However there are over 2 million people in the UK who do not respond effectively to this treatment and for these people, there are other options they can consider to treat their disease. Head to our website for more information - https://opa.org.uk/
Sickle Cell Society
2,006 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.
Canadian Organization for Rare Disorders
196 members
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. 1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. Johns, Newfoundland.
Heart Rhythm Disorders Support
6,821 members
We are an international charity working to support early diagnosis and improve outcomes for arrhythmia patients and carers worldwide. Please share your experiences below or give us a call on +44 (0)1789 867 501 if you would like further info or advice on arrhythmia care and treatments. We are here to help.
Circulation Foundation
582 members
We are an online peer support community for everyone affected by circulatory disorders. Join us to share your experience, ask questions and support one another! This community is run by the Circulation Foundation.
FND Action
666 members
History has created a lot of misconception of Functional Neurological Disorders which has led to poor treatment and care of those diagnosed, which includes men, women and children of all ages. It is positive that the increase in awareness is slowly helping, but there is still a long way to go to ensure all those diagnosed are supported and cared for appropriately. FND Action is a charity registered in the UK that has been set up by a handful of people who themselves have been diagnosed with FND and/or NEAD. Our aim is to help those across the UK by providing a peer support network, ongoing advice and current information, and to work in collaboration with healthcare professionals to ensure the best care is offered for recovery and long term health management.
My OCD Community
9,453 members
Welcome to My OCD Community! We’re glad you’ve chosen to join us! My OCD Community is a safe, supportive, informative, and friendly community for all people affected by OCD. It also supports all people affected by OCD related disorders such as Hoarding Disorder (HD), Body Dysmorphic Disorder (BDD) and the BFRB’s (body-focused repetitive behaviors, such as skin picking and hair pulling). The group is moderated by the International OCD Foundation (IOCDF) and HealthUnlocked (HU). The members of this group are vulnerable in sharing their triumphs and struggles and receive immense support from one another. In that same spirit, we welcome you to share your story and encourage others. Lastly, we urge you to get familiar with our Community Guidelines: https://healthunlocked.com/my-ocd/posts/138741516/community-guidelines. Once again, a huge welcome to your OCD Community :)
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