Menu
Close
Home
Pompe News
Icon Add
Icon Minus
Short UK LOPD exercise survey - aimed at the LOPD part of the UK community
Amicus Therapeutics Announces Approval and Launch of New Pompe Disease Therapy in the United Kingdom
This Little Thing I Do - OUT NOW!
NICE provides “Final draft guidance” for Pompbiliti + Opfolda
Centenary Institute receive funding for first therapy targeted at Pompe disease
We now have a JustGiving page!
Pompe Support Network now listed on 23andMe
Patient Registries for Pompe Disease
Read More...
PompAbility: The Film Series
Icon Add
Icon Minus
Episode 1, Arla
Episode 2, Oscar
Episode 3, Wayne
Episode 4, Jeff
Episode 5, Celia
PompAbility: The Director's View
Instructions to translate subtitles for our Film Series
Our People
Icon Add
Icon Minus
Allan Muir
Dr Kevin O'Donnell
Barbara Muir
Kevin Annesley
Hülya Apaydin
Wayne Belfitt
Ching Shen (Sam) Tye
Alex Jones
Read More...
Ways to Give
Pompe Disease
Research
Icon Add
Icon Minus
Aro Biotherapeutics gets FDA orphan drug designation for treatment of Pompe Disease
Ketones and Pompe
Muscle MRI in Pompe disease
Small fibre involvement is independent from clinical pain in late-onset Pompe disease
Experience the benefits of a Mollii Suit at our Coventry assessment day
What the development of Myozyme meant for patients, their families, and their community
UK Research study for adults living with Pompe disease
“Living with Late-Onset Pompe Disease in the UK”
Read More...
Pompe & Circumstance
Newborn screening
Icon Add
Icon Minus
A Rare Find : Newborn Screening Campaign Video
International Neonatal Screening Day 2022
A meeting of the All-Party Parliamentary Group to discuss newborn screening in the UK
Archangel Newborn Screening Review Campaign
Mental Wellbeing
Icon Add
Icon Minus
Counselling Support
Specialist Disabilities Counselling
Further Information about mental wellbeing
Other support services
Publications
Mobile phone Apps
Mental Wellbeing Survey
Support and Advice
Icon Add
Icon Minus
Benefits Advice and Social care
Pompe Hardship grants
Mental Wellbeing Support
IT Support
Equipment Support
Diversability Card
Medical Travel Insurance
Community Support Groups
Icon Add
Icon Minus
Diet and Nutrition
Exercise
Mental Wellbeing
Mental Health Support
Financial Support
Video Library
Icon Add
Icon Minus
Pompe Support Network at WORLD Symposium 2023
VR Healthy
ZiP 006: “Overview of gene therapy for Pompe disease”
ZiP 004: Nutrition and COVID-19 - Part B
ZiP 004: Diet and Nutrition advice for Pompe Disease - Part A
ZiP 003: Patients Introduction to Respiratory Muscle Training for Late Onset Pompe Disease
ZiP 002: Physical Wellbeing
Publications Library
Icon Add
Icon Minus
This Little Thing I Do
Leo and the Floppy Sloth
Pompe Voices
Icon Add
Icon Minus
Patient Perspectives Podcast
Malcolm & Beverley Knightley
Lucy & Barbara
Lucy & Barbara
Allan & Barbara Muir
Wayne & Farrah
Sponsors
Respiratory Health
Icon Add
Icon Minus
Vitamin D deficiency linked to increased likelihood of developing severe or critical COVID-19.
Distance Aware
Seven-year-old Pompe twins receive first dose of Covid jab
FAQs on COVID and Homecare Services from the NCHA
COVID-19 vaccination for children and young people aged 12-17 years
COVID-19: guidance on protecting people defined on medical grounds as extremely vulnerable
Vitamin D deficiency is associated with higher hospitalisation risk from COVID-19
Parent carers added to Covid-19 vaccine priority list across the UK
Read More...
Donate
Sign Up
Search
Pompe Logo
Sign Up
Homepage /
Publications Library
/ Studies
Filter:
All
Therapy
Treatment
Publications
Book
Lifestyle
Publications Library
