rebecca evans for gower
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Rebecca Evans takes Rare Disease 'Pledge for Patients'

20/3/2016

 
Rebecca Evans, Welsh Labour's prospective Assembly candidate for Gower, has put her name to Rare Disease UK's 'Pledge for Patients' ahead of the elections in May.

Rebecca Evans, who is currently a regional AM, has long been a champion of rare diseases in the Senedd.

She said: “Rare diseases are not rare. There are over 6,000 known rare diseases, and a rare disease is defined as any condition affecting fewer than 5 in 10,000 people.

“Rare diseases will affect 1 in 17 people at some point in their lives – that’s 175,000 people in Wales."

In recent years, Rebecca Evans has joined rare disease charities in successfully campaigning for the UK's first strategy to help build understanding of rare diseases and boost research to find and deliver more effective treatment, support and therapies. This is accompanied by a Welsh Rare Disease Delivery Plan.

She said: “It was clear to me that people affected by rare diseases sometimes faced common problems, including access to a timely diagnosis, misdiagnosis, lack of access to information, problematic transition from children’s to adult services, poor access to treatment, and lack of research.

"That is why I successfully raised the issue in the Assembly to ensure that a plan was put in place to facilitate research, and to improve access to care, treatment and support for patients affected by rare diseases and their families.


"By signing this pledge, I am committing to continue to work to ensure the plan is implemented, to press for improved diagnosis, and break down any barriers to innovation in this field."

Rebecca Evans has served on the Assembly’s Health and Social Care Committee and has Chaired the Cross Party Group on Disability. 
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