Skip to main content

Ehlers-Danlos Syndrome

Volume 593: debated on Tuesday 24 February 2015

The Government acknowledge the challenge posed in supporting patients with Ehlers-Danlos syndrome, which encompasses a complex range of conditions with a wide variety of symptoms. Diagnosis and investigation of suspected EDS takes place in dedicated regional genetics clinics, with specialist clinics, as my hon. Friend will know, at Sheffield Children’s NHS Foundation Trust and London North West Healthcare NHS Trust.

People in Burton have raised £130,000 to pay for a life-saving operation that is not available in the UK for Nina Parsons, my constituent, who suffers from EDS. I have another constituent, Sarah Pugh, who is having to pay for vital physiotherapy and an MRI scan. Will my hon. Friend look at what more can be done to help people suffering the misery of EDS, and will she agree to meet some sufferers to discuss the matter further?

I am certainly very happy to talk to my hon. Friend about his particular constituents. I am aware of the work that he has done in his local area. He will be interested to know that in 2013 the Government published “The UK Strategy for Rare Diseases” precisely to address such issues and the complexities around them, and aspects of that strategy speak directly to the challenges that he has just outlined. May I also take this opportunity to mention that there is an event tomorrow in Parliament organised by Rare Disease UK to mark rare disease day, at which the Under-Secretary of State for Women and Equalities, my hon. Friend the Member for East Dunbartonshire (Jo Swinson), will be speaking?