Pompe Disease

My Pompe JourneyMy diagnosis and living with Pompe
What causes Pompe?Understanding the cause of Pompe
Medical Alert PageA first stop for emergency service workers to understand Pompe Prior to starting treatment
- Medical Alert Page in Italian a translated copy of the medial alert page in Italian
Specialist Services and Treatment TeamsUnderstanding which specialist teams might be involved in your Pompe care.
History of PompeUnderstanding the man that discovered Pompe.
Knowledge Shares – Late Onset PompeLOPD Information about Pompe Disease
LinksUseful links to relevant sites
Eating Well for Pompe HealthA simple guide to suggestions for eating foods that can help in living with Pompe and maintaining muscle well being
Mental Wellbeing and PompeA simple booklet that offers mental well being ideas on living with Pompe
Falls Prevention Information SheetsA simple to use information booklet on the reasons people fall, issues surrounding falling and falls prevention.
Hope Travels – The Children’s Sloth ProjectAiming to give every child in the world with Pompe as soft toy called Hope that they can use to comfort themselves, be a mascot for hope in the future and take with them to medical appointments
Advanced Care Planner
Pompe Meal Planner
Oxygen Caution

Pompe Disease – Rare or Unaware?