Rebecca Evans, Welsh Labour's Assembly candidate for Gower, has once more thrown her support behind the annual Rare Disease Day (29th February 2016).
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."
Rebecca Evans successfully campaigned 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.
"I was very pleased to campaign alongside Rare Disease UK and people affected by range of rare diseases to make this happen."
Rebecca Evans has served on the Assembly’s Health and Social Care Committee and has Chaired the Cross Party Group on Disability.
Rebecca Evans added: "Rare Disease Day is marked globally, and it is a chance for us to raise the profile of issues affecting people with rare diseases."
Notes to Editors:
Key elements of the strategy include:
•a clear personal care plan for every patient that brings together health and care services, with more support for them and their families
•support for specialised clinical centres to offer the best care and support
•better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment
•promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases.