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Experiences with
Hereditary haemorrhagic telangiectasia (HHT)
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Communities
2 public communities
Charcot-Marie-Tooth UK
1,678 members
CMTUK provides support for people with Charcot-Marie-Tooth disease(CMT) and Hereditary Neuropathy with Pressure Palsy (HNPP). Our helpline is manned by experienced staff who can help with providing information and leaflets covering many subjects i.e. Claiming benefits, Anaesthetics. Orthotics, DVT, Exercise, updates on research and more. We have active Facebook groups, Regional support groups via Zoom and meetings in person and a comprehensive website providing information, awareness and CMTKIDS page. Events. CMTUK hold a regular Conference, Health and Wellness days, and more - giving you the tools to manage your CMT. CMTKIDS & Teens have chance to attend a long weekend with lots of activities and days out. Membership. Our Membership is £2.50 per month and this will give you access to concessions on the conference, health and wellbeing days, occasional free day out. The all important Alert card to keep with at all times and access to our ComMent magazine and news letter.
The UK Mastocytosis Support Group
549 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.