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Pompe Disease (GSD2)

Information & Support

After the diagnosis we are ready with a great deal of information, support, friendly contacts and signposting to other services where needed.

Help without judgement

It might seem very easy to talk about ‘support’. For some people it is not so easy asking for it or receiving it, even in really difficult circumstances.

At AGSD-UK everyone affected by GSD2 will find help without judgement. Our firm belief is that everyone is trying hard to live the best possible life they can.

If we can share ideas, help to fill in forms, solve problems together and learn from one another then life’s obstacles become a little bit easier for all.

AGSD-UK works according to principles of wellbeing, we believe that everyone can achieve, contribute, learn and stay connected in their community.

Visit the government’s presentation on “Five Ways to Mental Wellbeing”.

Specialist Care Advisor

The AGSD-UK Specialist Care Advisor (SCA) is employed full time. The service offers non-medical help. A lot of work is done by phone. She also visits the Highly Specialised Centre clinics and liaises with medical staff there. Home visits can easily be arranged.

Jane Lewthwaite has met or spoken with most people with Pompe in the UK so it is always worth phoning. Your personal information is treated confidentially.

She works with the Pompe Support Team and helps to develop new materials and leaflets. Even if your question seems odd or unusual it is worth phoning, she can tell you whether it is a common issue and what solutions have been found.

Jane is currently the GSD2 coordinator and liaises with the other GSD coordinators.

Contact Jane by email.

The Pompe Support Team

For details of this group of Pompe patients and their work, go to the Pompe Support Team tab.  

International Pompe Day

International Pompe Day gathering in Stoke, 2019.

International Pompe Day is held on April 15th every year and the Pompe Support Team often use this day as a focus for events or to promote awareness. This is the gathering in Stoke, 2019.