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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 Pompe Support Team (PST) was formed by people with Pompe to offer personal contact and sharing of advice, especially but not only, for newly diagnosed people.

Contacting the Pompe Support Team

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

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.

Local visits and talks

PST members are very pleased to undertake visits and give talks about living life with Pompe. This might be for example with a local Women’s Institute as a fundraiser, or it might be to a school in support of a child with Pompe.

If this is of interest, please contact the team to make arrangements.

The need to raise awareness

In the UK, Pompe is currently only diagnosed in one person in 436,000. This is extremely low compared to some other countries that have similar social groups.

Each person with Pompe is their greatest advocate and making others aware of the condition is paramount to saving lives. By raising awareness with medical professionals and interested communities we believe we are supporting more people to get tested and diagnosed.

For example, the PST presented to the Wales Thoracic Society to highlight better diagnosis of Pompe disease, and Ben Parker visited San Antonio in Texas to speak to the Audentes Patient Advisory Board.

Download Ben Parker’s report of the Audentes PAB.

Speaking engagements to raise awareness with professionals

The PST, in conjunction with AGSD-UK, offer a speaking programme to help in raising awareness and understanding of Pompe in the medical profession. An individual with Pompe disease will attend the meeting and explain the condition, their story and answer any questions that are raised.

If you would like to have a Pompe speaker at your meeting, conference or training session, please contact the Specialist Care Advisor, Jane Lewthwaite. She will liaise with the team and yourself to find the best matched speaker for your needs.

Email the Specialist Care Advisor.

Download our Speaking Out flyer.