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User groups: People with long-term health conditions

Region: National

The HMSA is a UK based charity but does support people overseas. We support people who have one of the hypermobility related disorders, which are often complex and multi-systemic. These conditions often take longer than 10 years to diagnose. The HMSA works with people who have one of the following conditions; hypermobility spectrum disorder, Ehlers-Danlos syndromes, Marfan syndrome, Osteogenesis Imperfecta, Stickler syndrome, PXE. This is not a definitive list, as the charity will work with anyone who is struggling with a hypermobility related disorder. We provide information to NHS England's Information Standard via a website and also printed publications. We also offer a dedicated helpline staffed by experienced and trained volunteers who all have one of the conditions we support. The HMSA has a network of support groups throughout the UK. These have a self-management theme. The HMSA has an extensive social media presence, where people get ask questions and be supported. The HMSA believes that validation is essential. People are really struggling with the complex and multi-systemic symptoms they experience. It often takes 10 years plus to gain a diagnosis, and during this time, people are often dismissed by the medical profession and told that their symptoms are psychological. The HMSA believes that learning about your condition enables you to make informed decisions about you care. We also support people to get the right services at the right time and in the right place. The HMSA has a model for training professionals and educating providers of services. It is called the HMSA Kent Model, and it is currently being rolled out across the UL.
(0)33 3011 6388
49 Greek Street, London, W1D 4EG