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.
REDUCING THE AGE OF DIAGNOSIS
Eliminating the historical delay of an average of 20 to 25 years from first presentation to correct diagnosis will greatly improve quality of life.
HELPING PATIENTS TO UNDERSTAND
Patients who understand the concepts behind their condition and have learnt how to manage it, have a significantly improved quality of life.
ENCOURAGING REGULAR PHYSICAL ACTIVITY
Physically active individuals are much more likely to improve their exercise tolerance and ultimately the clinical course of the disease.
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.