It is usually a long and frustrating process to get diagnosed with this ultra rare disease, but once you are it opens the door to understanding and improvement.
Newly diagnosed information leaflet
This is the place to start. In the UK we try to ensure that everyone receives a copy of this leaflet for new patients at the same time as being given their diagnosis. We distribute them to the laboratories and specialists. If you didn’t receive one, or you are outside of the UK, you can download a PDF.
Have an initial chat
Contact our McArdle’s Coordinator for an initial chat about your diagnosis, the condition and what it all means in practical terms. The coordinator can send you copies of our free publications such as the “101 Tips” book, and will register you with AGSD-UK and from then on we can keep you up-to-date with developments.
Name: Andrew Wakelin
Phone: 0300 123 2795
Email the McArdle’s coordinator.
The first book to take on board – 101 Tips.
Browse our information
There is much to take in and you probably have many questions. Use the tabs and links to help you navigate through some of our key content on McArdle’s here on our web site. And read the publications which will arrive from the McArdle‘s coordinator, especially the “101 Tips” book. The future will soon become a lot more certain.
If at any time you have more questions then get in touch – we are here to help.