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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”.

GSD2 coordinator

The coordinator for GSD2 is Ben Parker. He is here to help you.

If you feel you would like to get in touch you can contact Ben via the “Message us” form

Specialist Care Advisor

AGSD-UK specialist care advisor Elizabeth Davenport is available to help with all aspects of non-clinical support. She can offer a listening ear plus information and advocacy around a whole range of issues, including education, your rights at work, social care, transport, housing, and community grants, so you can get the support and services you need.

Don’t hesitate to contact Elizabeth by email

Contact Elizabeth by email.

Benefits Advisor

AGSD-UK benefits advisor Zainib Hussain can help with applications and appeals for benefits such as universal credit, personal independence payment, disability living allowance/child disability payment, employment support allowance and carer’s allowance.

To discuss what you might be entitled to and for help with any claims, just email

Contact Zainib 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.