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NHS England to screen 100,000 babies for genetic conditions including Pompe
Survey Results: Pompe Disease and Covid
2024 AMDA/IPA Conference Presentations Are Online
Spark Therapeutics Have Stopped Their Pompe Program
Pompe Support Network attended the 2024 AMDA/IPA Conference
2024 AMDA/IPA International Pompe Patient & Scientific Conference
April 15 is International Pompe Day
New CEO Announcement
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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
Hülya Apaydin
Wayne Belfitt
Ching Shen (Sam) Tye
Dennie van Meijeren
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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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Benefits Advice and Social care
Pompe Hardship grants
Mental Wellbeing Support
IT Support
Equipment Support
Diversability Card
Medical Travel Insurance
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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This Little Thing I Do
Leo and the Floppy Sloth
Pompe and Me
Pompe Voices
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Patient Perspectives Podcast
Malcolm & Beverley Knightley
Lucy & Barbara
Lucy & Barbara
Allan & Barbara Muir
Wayne & Farrah
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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