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Amicus - Pompe Disease Monitoring Workshop Report
First dosing in AskBio’s LOPD gene therapy trial
Shionogi Enrolled Patients in Phase 2 SRT Clinical Trial
Aro Biotherapeutics Reports Positive Phase 1b Topline Results for ABX1100
WORLD Symposium Poster Presentation
Real-world outcomes: LOPD patients who switched to second generation ERT
In Memoriam, Tiffany and Maryze
Exclusive gene editing license for infantile and late onset Pompe disease
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Pompe Podcasts
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Pompe Island Discs 3
Pompe Island Discs 2
Pompe Island Discs 1
Patient Perspectives Podcast
Malcolm & Beverley Knightley
Lucy & Barbara
Lucy & Barbara
Allan & Barbara Muir
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PompAbility: The Film Series
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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
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Allan Muir
Dr Kevin O'Donnell
Barbara Muir
Kevin Annesley
Wayne Belfitt
Luke Fraser
Stuart Goodwin
Gemma Stubbings
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Ways to Give
Pompe Disease
Research
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Good Vibrations?
Experiences with Electrical Muscle Stimulation
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
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Pompe & Circumstance
Newborn screening
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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
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Counselling Support
Specialist Disabilities Counselling
Further Information about mental wellbeing
Other support services
Publications
Mobile phone Apps
Mental Wellbeing Survey
Support and Advice
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Advice for ERT Reaction outside of Hospital
Benefits Advice and Social care
Pompe Hardship grants
Mental Wellbeing Support
IT Support
Equipment Support
Diversability Card
Medical Travel Insurance
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Community Support Groups
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Diet and Nutrition
Exercise
Mental Wellbeing
Mental Health Support
Financial Support
Video Library
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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
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Pompe Patient Treatment Guidelines
Pompe Patient Appointment Sheet
Leo and the Floppy Sloth's Party and Friends
Pompe and Me
This Little Thing I Do
Leo and the Floppy Sloth
Sponsors
Respiratory Health
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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
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Pompe Voices Podcast
Pompe Voices Podcast
Our podcast section has moved here:
https://pompe.uk/pompe-podcast