Today as a member of Genetic Alliance UK, Myotubular Trust is delighted to announce that we are taking part in a campaign Action for Access. This campaign was launched yesterday at the Houses of Parliament at the All Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions. This is in recognition that it can be slower to receive new treatments or medicines as a UK patient, compared to patients with the same rare disease in other countries.
The goal of this campaign is to ensure that the NHS in the UK reviews and changes the current decision-making processes to modernise them and ensure that they are much fairer and more streamlined, therefore preventing unnecessary delays in patients of rare disease getting the treatments they desperately need to improve their health and quality of life. Myotubular Trust will be fully supporting this campaign to ensure that patients with myotubular and centronuclear myopathy have the best possible opportunity to access treatments for their condition as they become available.
With new breakthroughs in research now emerging for our conditions, and the possibility of treatments for some of the genetic mutations which cause myotubular and centronuclear myopathy a tangible distance away – now is a really important time to join Myotubular Trust in supporting the Action for Access Campaign. Watch this space for more information about how you can help us!