UK Research study for adults living with Pompe disease Posted On: 09/02/2022 Barriers and facilitators to Physical Activity and exercise in Late Onset Pompe Disease (LOPD) A qualitative study by Nicola Condon exploring patient perspectives and experiences. Read More...
“Living with Late-Onset Pompe Disease in the UK” Posted On: 24/09/2021 : interim results characterising the patient journey and burden on physical, emotional and social quality of life Allan Muir, Chair of the Pompe Support Network, presented the Poster “Living with Late-Onset Pompe Disease in the UK” at the World Muscle Society on Thursday 23rd September 2021. Read More...
Pompe quality of life: Future Research Priorities Posted On: 08/07/2021 To help Pompe Support Network understand your research priorities we've created a simple form which we'd appreciate your response. Read More...
Invitation to UK patients to participate in research into patients' and families' experience of living with Pompe disease Posted On: 03/06/2021 An invitation for people in the UK living with Pompe disease to help with research which will explore the effects of Pompe disease on families. Read More...
