Local Muscular Dystrophy patients and charity volunteers in Parliament
12:04pm Monday 9th September 2013 in News
CEREDIGION MP Mark Williams met in Parliament with patients and local charitable helpers from Ceredigion this month.
The group attended the launch of a report by the All Party Parliamentary Group for Muscular Dystrophy into access to high-cost rare disease medicines.
The report reveals that while potential treatments for the devastating muscle-wasting condition Duchenne muscular dystrophy, are finally in clinical trials, parents fear that the “race against time” for their children to be treated may be lost owing to unnecessary delays, funding issues and bureaucracy.
Mr Williams said: “Talking to constituents at the launch brought home the action required to fulfil the recommendations laid out in this inquiry. Without the right assessment processes and funding in place we risk families enduring agonising delays before their children can benefit from cutting-edge therapies, which could drastically improve their quality of life. I am glad the report also takes into account the devolved health care system in Wales, and I have written to the Health Minister in the Assembly highlighting its recommendations.”