HELPING PATIENTS TO UNDERSTAND
Patients who understand the concepts behind their condition and have learnt how to manage well, have a significantly improved quality of life.
Conversely, those who have not had the opportunity to grasp the fundamentals can experience persistent pain, be frequently hospitalized, accumulate muscle damage, suffer deterioration in their condition, experience psychological issues and develop concomitant conditions.
The paperback book “101 Tips for a good life with McArdle Disease” is available in several languages.
To achieve the education of people with a muscle GSD promptly after receiving their diagnosis.
We will work towards our goal by:
Publishing patient-focussed information for people diagnosed with a muscle GSD.
Maintaining a high profile web site which an be easily found by people who are newly diagnosed, with reliable and up-to-date information.
Operating social media channels for people with muscle GSDs and providing experienced Admins to monitor posts and provide appropriate guidance as necessary.
Producing video and audio recordings explaining aspects of muscle GSD and its management.
Running practical courses to help people understand and practice management techniques and expand their boundaries.
Presenting at conferences and workshops to disseminate effective management techniques.