Hypermobility Syndromes Association (HMSA) Membership.
Hello and thank you for your interest in becoming a HMSA Full Member. As a HMSA Full Member you will be welcomed into a warm group of people who really do understand what it is like to suffer from one of the hypermobility syndromes, whether this be Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome (EDS), Marfan Syndrome, or other more rare forms of Hereditary Disorder of Connective Tissue (HDCT). We are proud to say we support everyone who has a hypermobility syndrome to manage the chronic pain and fatigue, injuries, gastrointestinal, autonomic dysfunction and the whole myriad of symptoms that affect your daily life. Hypermobility syndromes are highly complex and multi-systemic and it can be overwhelming when you finally achieve a diagnosis to know what to do next!
The HMSA is a positive organisation who believe that education on the management of a hypermobility syndrome can help to empower individuals and allow them to experience a good quality of life but we also know that many of our members are severely disabled by the condition and these members can also benefit from the experience and support of other people with the disorder.
The charity itself is run by people who have one of the hypermobility syndromes. We are all affected very differently and are at completely different stages in our journeys on managing the condition but what unites us all is the fact that we really can say ‘we understand’. Those two words are so powerful and we guess that is what one of the benefits of membership of the HMSA is…but we also validate your experience and will never put you down or disbelieve what you tell us about your condition, experience or how you are treated by the professionals charged with providing appropriate services to support and manage your condition.
Your membership is important to allow us to continue funding the work we do in supporting you as an individual but also everyone who has a hypermobility syndrome, whether already or yet to be diagnosed. This could be in researching and providing new information on a subject which affects us all. It may be to allow us to join with umbrella organisations to have a ‘bigger voice’ when it comes to campaigning on your behalf for appropriate services.
The HMSA also hosts a Patient Conference and Residential Weekend every two years which provides HMSA members with the latest medical information and research. Our Medical Advisors and many guest clinicians and experts attend the Patient Conference and Residential Weekends to present the latest information and are always well received. Priority for booking is given to HMSA members.
In addition, the HMSA has a newly designed Family Programme which is developed to work with both parents and children affected by a hypermobility syndrome. These programmes are run up and down the country and priority it to HMSA members.
We also organize Social Weekends or Big Bashes where people can come together to meet up with new friends, exchange experiences and link in to the latest HMSA projects. These weekends are always oversubscribed because it is great for us all to be together and be and feel ‘normal’!
The HMSA is globally recognised for its work in supporting people with a hypermobility syndrome. We are contacted by professionals and experts from not just the UK, but from all over the world for information and advice. Being a FULL HMSA member will mean you will be part of this and be contributing.
The HMSA also contributes to research by directly funding grants or by co-applying for research projects with our Medical Advisors. This is something we are very keen to continue and that is where all our members come in. Members are invited to take part in research either through direct communication from the staff in the office, or online surveys or via information in the newsletter packs. At times we will advertise information for HMSA members on our website, forum, Twitter or Facebook Pages.
Sometimes we provide non-identifying data to researchers or contact details but members can always opt out of being contacted by researchers, professionals or even group leaders via the membership application. This is always respected and no pressure is ever applied to a member to take part and if you change your mind it’s easy to update your details. We follow the latest Data Protection legislation so you can be sure that we keep your details securely and we always maintain confidentiality.
Importantly the HMSA is a dynamic organisation which means we continually challenge current medical understanding of what a hypermobility syndrome is and campaign for better recognition, services and support for our members.