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Connective tissue diseases
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52 public communities
Ehlers-Danlos Support UK
2,973 members
Ehlers-Danlos Support UK (EDS) assists those with Ehlers-Danlos. It is a genetic connective tissue condition that is a multi-systemic syndrome.
LUPUS UK
31,950 members
This HealthUnlocked Community is a peer support forum facilitated by LUPUS UK - The national registered charity for people affected by lupus and assisting those approaching diagnosis. This community is available for anybody affected by lupus to get information, support and advice from other people who are similarly affected. We welcome people with any form of lupus (SLE, discoid lupus, drug-induced lupus, cutaneous lupus etc.) as well as those with associated conditions such as mixed connective tissue disease (MCTD) and undifferentiated connective tissue disease (UCTD). The community discusses a wide range of topics including; diagnosis, symptoms, medical appointments, medications and support available. LUPUS UK provides a wide range of publications about lupus which are free to read and download on our website HERE: https://www.lupusuk.org.uk/publications/ Please consider paying £10 a year to become a member of LUPUS UK. You will receive our magazine three times a year and our charity to support others, fund medical research and Specialist Lupus Nurses. JOIN HERE: https://www.lupusuk.org.uk/shop/#!/Memberships/c/14192101/offset=0&sort=normal
EFA
2,080 members
European Federation of Allergy and Airways Diseases Patients’ Associations. We are a community dedicated to supporting those impacted by allergy and airway diseases, such as asthma.
The UK Mastocytosis Support Group
569 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.
Teesside Lupus Support Group
294 members
Teesside Lupus Support Group is a group in the North East which aims to raise awareness of Lupus and all diseases associated with it. We give support and information to newly diagnosed and to those living with Lupus. We endeavour to gather as much information as we can to support one another. We also hold meetings and give one to one support to those who need it.
British Heart Foundation
51,521 members
We are the British Heart Foundation (BHF), the largest independent funder of cardiovascular research. We fund research into life saving cures to beat heart disease, stroke and vascular dementia, and stop conditions like diabetes from causing them, to help people and families live longer, better lives. Over the years, our pioneering research has helped to transform the lives of people living with heart and circulatory conditions. As well funding ground-breaking research, we’re here to support people affected by heart and circulatory diseases and their risk factors. So whether you're living with a heart or circulatory disease, or just want to find out more about them, this is the place to be. If you have any questions or concerns, and would like to speak with one of our cardiac nurses, please do contact our Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm or email hearthelpline@bhf.org.uk This community is moderated by HU_Moderator
Behçet's UK
5,298 members
Behçet’s UK cares for all those affected by Behçet’s including diagnosed patients, those not yet diagnosed, those that think they may have Behçet's, and their carers. We promote research into the condition and our ultimate aim is to find a cure but in the meantime, we will strive to obtain the best care for all Behçet’s patients. Our Behçet's UK Medical Factsheets (https://behcetsuk.org/behcets-medical-factsheets) are written by lead Behçet’s clinicians. Behçet’s UK: How we help - We were instrumental in establishing Specialist Centres for Behçet’s in NHS England and we now lobby for equivalent care in Wales, Scotland, and Northern Ireland. - Hold an Annual General Meeting and Conference. Allowing those affected by Behçet’s to hear from Behçet’s specialists and patients, ask questions, and meet others with this rare condition. - Publish a quarterly newsletter keeping our members up to date with the Society’s activities including lobbying on rare diseases along with our work with researchers. - Maintain an active Medical Advisory Panel with eminent representatives from each of the medical disciplines involved in Behçet’s to whom questions can be directed. - Manage a website that includes factsheets written by lead Behçet’s clinicians on each of the areas affected by Behçet’s. - Provide a Helpline run by volunteers who have an understanding of Behçet’s. - Facilitate peer-to-peer support groups to minimise the isolation experienced by patients. - Award small personal grants for items that will help members manage their Behçet’s day-to-day. - Host an annual event for members to have fun with their friends, family, and carers and get to know others affected by Behçet’s Become a member Join here: https://behcetsuk.org/how-to-join/
Help with Healthcare Costs
156 members
Welcome to the conversation! NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can't afford medications and healthcare costs in the United States. More than 1.3 million patients, family members, healthcare professionals, social workers and patient advocates use the NeedyMeds website each year. We regularly update data on over 9,000 assistance programs, 15,000 free/low-cost/sliding scale clinics and nearly 1,500 drug discount coupons. We also publish information about resources for specific diseases.
MPN Voice
10,606 members
MPN Voice provides information and emotional support to patients with Myeloproliferative neoplasms. MPNs are chronic diseases affecting the levels of blood cells in the body, the three main types are Essential Thrombocythaemia (ET), Polycythaemia Vera (PV) and Myelofibrosis (MF). People affected by MPNs often feel isolated and need support and accurate information about their MPN, MPN Voice provides this support and information via the website, patient forums and this online forum at HealthUnlocked which gives people with a MPN a place to ask questions and discuss their condition, symptoms, medication and other related concerns with fellow patients.
Neuro Support
1,988 members
Welcome to the Neuro Support Community. This community exists to improve the quality of life of people affected by any neurological condition, including: ALS, Alzheimer’s disease, Back pain, Bell's palsy, birth defects of the brain and spinal cord, brain aneurysm, brain injury, brain tumors, cerebral palsy, chronic fatigue syndrome, concussion, dementia, disk disease of neck and lower back, epilepsy, Guillain-Barré syndrome, migraine, multiple sclerosis, muscular dystrophy, neuralgia, neuropathy, neuromuscular and related diseases, Parkinson's disease, scoliosis, seizures, spinal cord injury, spinal deformity, spinal disorder, spine tumors and stroke. Whether you're affected directly, caring for someone or know someone affected, everyone is welcome. Join today to share your experiences, receive support and exchange advise in a community of people who truly understand. Introduce yourself today: https://healthunlocked.com/neuro-support/write
Chronic Pancreatitis Support
874 members
Welcome to the Chronic Pancreatitis Support community, here to support anyone impacted by chronic pancreatitis and related conditions, such as EPI (Exocrine Pancreatic Insufficiency). Whether you are looking for a diagnosis or currently on Pancreatic Enzyme Replacement Therapy (PERT), here you will find peers with whom you can share experiences, information and participate in research events within the community. This community is offered by Mission: Cure on the HealthUnlocked platform. We serve the patients & communities affected by recurrent acute and chronic pancreatitis. Our impact extends to disease research and healthcare, applying innovative financing models to advance new therapies and cures. Beginning with chronic pancreatitis, we are committed to advancing new therapies and accelerating a cure for debilitating and untreatable diseases—within ten years. This community has been funded in part by Aimmune Therapeutics, Inc., a Nestlé Health Science Company. Anonymous data from the content shared in this community is used to improve the understanding of this condition.
Drink Free
1,613 members
Welcome to the Drink Free community! This is a space for everyone to discuss their drink free journeys and get support from others who understand. Whether you're reducing your alcohol intake or cutting it out completely, this is the community for you.
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