OUR KEY CAMPAIGNS
Our board members have established these campaigns on which to concentrate our efforts and resources in order to achieve our objectives. Other work will continue, but these are our main focus.
PROMOTING CLINICAL PRACTICE GUIDELINES
Given that the mainstay for managing muscle GSDs is effective day-to-day self-management, it is vital to have standardization of care based on best practice.
CONTRIBUTING TO RESEARCH
There is a distinct requirement for establishing networks of patients and their families on an international basis, and ensuring that patients’ needs are fed into the discussions on the research agenda.