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Pompe Disease (GSD2)

Pompe Support Team

This section tells you about the Pompe Support Team, and has information provided by them which will be of particular interest to newly diagnosed Pompe people.

Introducing the Pompe Support Team

What is the Pompe Support Team?

The team was formed by people with Pompe to offer personal contact and sharing of advice, especially but not only, for newly diagnosed people.

A group of volunteers

This friendly group have, or are affected by, late-onset Pompe disease. They got together to provide help for people who are newly diagnosed. They also work on publications and leaflets, great ideas to help share information. Their mantra is ‘knowledge is power’.

The team meets a few times per year although they live in different parts of the country. They organise meetings, get-togethers and occasionally have a social evening too.

Conference welcome session

The PST provide a welcome session every year at the AGSD-UK conference, this is especially to help make introductions for people who have not been before.

Speaking engagements

PST members often accept speaking engagements to talk about living life with Pompe. This might be for the local WI as a fundraiser or it might be to the Wales Thoracic Society to highlight better diagnosis of Pompe disease. Ben Parker visited San Antonio in Texas to speak to the Audentes Patient Advisory Board.

Download Ben Parker’s report of the Audentes PAB.

Contacting the Pompe Support Team

Making contact with the PST is easy – by phone on 0300 123 2790, or email the team here.