Rebecca Evans AM has met with disability campaigner Alan Thomas to discuss issues affecting people with rare diseases in Wales.
Alan Thomas is Chair of Ataxia UK’s South Wales Branch, which offers support and information to people in Pembrokeshire, Carmarthenshire, Powys and Ceredigion. He also runs the Living with Ataxia Global Network and campaigns widely on rare diseases.
Mrs Evans is Chair of the National Assembly for Wales’ Cross Party Group on Disability, and has lead a debate on rare diseases in the Senedd. She said: “Although the conditions are rare, there are common problems facing people with rare diseases. These can include access to a timely diagnosis, misdiagnosis, lack of access to information, poor coordination of care, problematic transition from children’s to adult services, lack of access to treatment, a lack of research, and inequality of provision.
“Thanks to a European Union recommendation, however, the UK will soon have its first ever rare disease strategy. This is an exciting development that has the potential to bring lasting, positive and transforming improvements to the quality of life of people with rare diseases. I am keen to ensure that this opportunity is seized in Wales.”
Mrs Evans and Mr Thomas had a wide-ranging discussion, including about the need to raise awareness of rare diseases amongst people working in the field of health, and other frontline professionals, as well as increasing understanding amongst the wider public. They also explored the increasing role that telehealth could play in meeting the needs of people with rare diseases.
Alan Thomas said:
“Awareness of Rare diseases is paramount in all walks of life, to the benefit of us all.
I am very Proud to be involved with spreading the, very important, word about the problems that a person with a rare disease may face in Wales, UK, and Globally.
“As much of Wales is a very rural community the use of Telehealth is of much importance for people with a Rare disease to be confident that their well-being is monitored leading to an inclusive life.
“As a Rare disease patient I only know too well how a person can be treated, and this I aim to change.”
A rare disease is defined as any condition affecting fewer than 5 in 10,000 of the general population. There are over 6,000 known rare diseases. Rare diseases will affect 1 in 17 people at some point in their lives – that equates to 175,000 people in Wales.
Rebecca Evans AM’s contribution to the debate on rare diseases: http://www.rebeccaevansam.com/rebecca-holds-debate-on-rare-diseases/
More information on Ataxia South Wales:L http://www.ataxiasouthwales.org.uk/
Living With Ataxia Global Network: http://www.livingwithataxia.org/