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HMSA statement on release of new EDS nosology.

Posted By FLICK MCLUCKIE, March 15, 2017

The HMSA listened with interest to The Ehlers-Danlos Society webinar this afternoon (GMT).

We will be discussing the finer details and come back to you with any further comments in due course.

In the meantime, please know that the HMSA has been working with HSD for 25 years and believes we are well placed to continue to offer our experience to the HSD community. We will continue to lobby for earlier diagnosis, treatment and management.

With regard to the changes to the nosology for the EDS syndromes, the HMSA is pleased that recognition has finally been given in the influence of hypermobility.

The HMSA has been an umbrella group for many years for people with HSD, EDS, Marfan, Stickler, OI and PXE because of the lack of support for hypermobility issues.

We are very passionate about our work to assist people in living with their complex and multi-systemic conditions and in educating the professionals that members are likely to meet in their journey, through the health, social and education services.

We are already directing and assisting with a care pathway in the UK and  have developed an HMSA Hypermobility Professional Masterclass, which is run regularly. Currently we are developing a new model of work in Kent, which involves building up a network of professionals, who are trained by us and our medical advisors. This is on top of us trialling a new HMSA Self-management Programme in conjunction with local services.

The services we supply enable us to support everyone because these services are devised by real representatives of people with the hypermobility disorders or syndromes. You, whether a full HMSA member or a member of our wider community, are what matters! It’s your needs we aim to meet and support.

There ‘really’ is room for everyone under our umbrella!

Best wishes,
Donna, CEO

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