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Experiences with
Alpha-1-antitrypsin
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Communities
13 public communities
Guy Francis Bone Cancer Research Fund
96 members
Bone Cancer is Britain’s Number 1 Teenage Cancer. Guy’s Fund raises money for vital research, promotes awareness and campaigns for patients’ rights. Alarmingly, Bone Cancer is Britain’s Number 1 Teenage Cancer. The Guy Francis Bone Cancer Research Fund raises money for vital research, promotes awareness and education, advocates a “Patient Voice” and also campaigns for patients’ rights including important welfare reform for young people undergoing long term treatment programmes which may result in permanent physical disability.
AMN EASIER
1,322 members
AMN Easier was set up to help men and women who have adrenomyeloneuropathy (AMN) - to help make this disease a bit easier to live with. AMN EASIER provides information and support by (1) providing answers to health questions from other AMN patients with experience of the disease; (2) showing what other AMN patients are doing and thinking; (3) describing ideas and possibilities for therapies that could help
Lung Cancer Support
4,049 members
The Lung Cancer Support community is an online peer to peer support network run by the GO2 for Lung Cancer, the place where everyone impacted by lung cancer finds personalized care, powerful connections, and purposeful collaboration—uniting around shared goals to empower people, increase survival, drive innovative research, and transform the future of lung cancer. If you are in need of our personalized services, please call our helpline at 1-800-298-2436
Fibro Friends WSM
1,075 members
Fibro Friends WSM is registered with the Fibroduck Foundation Our aim is to reach out to others in the area with Fibromyalgia, Chronic Fatigue and Similar Conditions. We run Regular Coffee Mornings and Meetings and occasionally invite guest speakers to come along and talk to us, to help us have better understanding of our conditions and how to manage them. We Meet Twice a Month: On The Second and Last Tuesday Every Month At 11am 1 in 4 People 39 Oxford Street. Weston Super Mare
Hidradenitis Suppurativa Support
670 members
Helping to raise awareness, understanding and provide support for the chronic, debilitating skin disorder Hidradenitis Suppurativa (HS). Hidradenitis Suppurativa is estimated to affect only 1% of the UK population, however these figures could in effect be higher due to mis-diagnosis, and those who suffer alone in silence, as the disease dominates the most intimate areas of the sufferer, thus leaving some people too ashamed or embarrassed to go to their doctor. Our aim is to increase public knowledge on the symptoms, treatments and severities of Hidradenitis Suppurativa.
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.
Cavernoma Alliance UK
439 members
We are a community that supports those affected by cavernoma, otherwise known as cerebral cavernous malformations or cavernous angioma. What is a cavernoma? A cavernoma looks like a raspberry and are also known as cavernous angioma, cavernous haemangioma or cerebral cavernous malformation (CCM). A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord. Cavernomas can measure from a few millimetres to several centimetres. A cavernoma can get bigger, but this growth is not cancerous, and it does not spread to other parts of the body. Frequency 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
Living Positively with Cerebral Palsy
463 members
I have Cerebral Palsy. I have had it since birth. I'm adult now. What I have found is that there is a lot of information out there for parents who have children with Cerebral Palsy. However, there is not a lot of support and information for adults with the condition. This is bad because Cerebral Palsy is treated like a childhood condition. This is surprising as it is not a progressive condition. People with Cerebral Palsy do not fall off the face of the earth when they hit eighteen years old. 1 in every 400 children are affected by cerebral palsy. These children will have this chronic condition for life. So if you want to share your experiences of Cerebral Palsy in adulthood. This is the place to do it. Connect with others who understand your situation!
Acid Reflux Support
1,667 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/
Aspergillosis and Rare Fungal Infection Support
3,884 members
Serious fungal infections are very rare but also very under-diagnosed and that has several consequences. 1) There are many more cases than we currently know about 2) People who are diagnosed can be very isolated and benefit from community support This community is intended to address these issues by informing and educating people in the UK about serious fungal infections, what to look out for, how to get diagnosed and where the expert help is in the UK. We also feel that informing patients is a great way to support their medical teams. The National Aspergillosis Centre (www.nationalaspergillosiscentre.org.uk), currently based in Manchester is the main UK centre for the serious fungal infections caused by Aspergillus (see aspergillosis.org) and is where admin of this community is based, so we have all we need t to advise you on aspergillosis - maybe even get you a referral to this centre if warranted. This is also the site of the Mycology Reference Centre in Manchester (http://mrcm.org.uk/) which is a big skill base for the identification of all pathogenic fungi, consequently, we can support the diagnosis and treatment of other rare fungal diseases like cryptococcal meningitis, Candida bloodstream infection, Pneumocystis pneumonia and more. Note that we only support people who can use the UK NHS and only for questions and conversation about serious rare fungal infections and NOT the very common infections that you should be consulting your GP or pharmacist about - we cannot replace your relationship with your medical team but we may be able to help them help you. Any entries that seem to us to be better dealt with by your medical team first will be deleted. Any non-UK questions will also be deleted - sorry, but we are funded by the UK taxpayer and they have to come first!
Fertility Network UK
55,335 members
Fertility Network UK is a registered charity supporting anyone who is affected by fertility problems. Whether you are just starting to have concerns about your fertility or are already having fertility treatment such as IUI, IVF, ICSI or donor treatment, we are here to support you. We aim to raise understanding of infertility, to improve fertility education and to push for fair provision of fertility treatment throughout the UK. We also work with employers to better support those with fertility problems in the workplace. Our HealthUnlocked community is a place for anyone trying to conceive (TTC) to find peer support and understanding.
The UK Mastocytosis Support Group
583 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.
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