Pompe Support Network

Pompe News

Posted On: 09/04/2024 Recently Posted!

Many people receive the plethora of global news items through Google Alerts, Facebook and other Pompe websites, for example "Pompe Disease News". Posts here will be restricted to significant developments within the Pompe community, such as reports from patient meetings.As we are a community website,

Read More...

PompAbility: The Film Series

Posted On: 09/03/2022

PompAbility is a series of short documentary films illustrating people living with Pompe Disease, a rare neuromuscular condition. Please subscribe to our YouTube channel to be notified of the latest films: Pompe Support Network YouTube Channel Click here for instructions on how to translate subtitle

Read More...

Our People

Posted On: 03/10/2019

Based in the United Kingdom, we are a network of individuals, families, scientists, and healthcare professionals who aim to improve the lives of all people living and working with Pompe disease. The network is run by members of the Pompe community, for the benefit of the Pompe community. Membership

Read More...

Ways to Give

Posted On: 18/11/2019

We are developing a number of ways for our supporters to donate to support our work. You can donate or fundraise for us at our JustGiving page. We are signed up to Give as you Live and eBay, so we can benefit from your online shopping without costing you a penny! Just follow the links below to assig

Read More...

Pompe Disease

Posted On: 02/10/2019

Pompe disease is an ultra-orphan disease that is currently diagnosed in less than 200 people in the United Kingdom. There are many good online references that describe Pompe disease in infants, children and adults; but there are also many that are out-dated and can be misleading.

Read More...

Research

Posted On: 14/10/2019

On this page we will publish news of interesting research as we become aware of it. That may be from press releases, published papers or our own reports from attending meetings and conferences.

Read More...

Pompe & Circumstance

Posted On: 25/08/2022

The full length release of 'Pompe and Circumstance' by the Pompe choir has launched and you can watch it here!

Read More...

Newborn screening

Posted On: 25/06/2021

In Pompe disease, early diagnosis allows treatment to begin soon after birth, and babies who receive treatment early are less likely to need a ventilator to help them breathe, improving chances of survival. Newborn screening is the process of testing newborn babies for serious, but treatable, condit

Read More...

Mental Wellbeing

Posted On: 28/05/2021

Mental Wellbeing is so important for us all, especially during these times, so if you need urgent support there are lots of places you can go for help. This section is here to help you find outlets who can offer you the support you need. Remember: It's ok not be ok.

Read More...

Support and Advice

Posted On: 27/08/2020

The ethos of the Pompe Support Network is to share advice and offer support throughout the Pompe community. As Pompe is so rare, shared experience from members of the Pompe community is of critical importance, so this section provides a host of information to help all members.

Read More...

Community Support Groups

Posted On: 02/10/2019

Community groups are central to everything that happens within the Pompe Support Network. Individual groups discuss their own experiences or share views on published research, news items, or anything related to the group's subject. This section describes the current groups and their discussions, pro

Read More...

Video Library

Posted On: 23/04/2020

A growing collection of video presentations from our "Zoom into Pompe" (ZiP) online meetings and other sources. Click here to view our series of PompAbility films - a series of short documentary films illustrating people living with Pompe Disease. Please subscribe to our YouTube channel to notified

Read More...

Publications Library

Posted On: 18/07/2023

Read More...

Pompe Voices

Posted On: 15/03/2021

Welcome to Pompe Voices, a platform for members of the Pompe community to casually chat about their lives with Pompe Disease. Each podcast features a member of the Pompe community in conversation with, for example, their partner, sibling, friend or carer, discussing the good, bad and often amusing s

Read More...

Sponsors

Posted On: 01/10/2020

Below is a list of the associations to whom we would like to express our massive appreciation and gratitude for their sponsorship to the Pompe Support Network, and who have helped enable us to provide a difference to the Pompe community.

Read More...

Respiratory Health

Posted On: 25/03/2020

Improving immune health

This page provides recent information about immune health for everyone, but especially the Pompe Community. Please keep in touch with the Pompe Support Network by letting us know your experiences and any difficulties where we may be able to help.

Read More...