Now what do I do?
You’ve been thrown into this new world.
You’re dealing with words you’ve never heard before, people you never knew before, medical tests you never knew existed…
Find your tribe
Stay positive
Laugh!
There are many places you can go for help and information. Here are just some of them.
FB groups
Cure Pompe Disease
Pompe Friends
Pompe for Girls only. No boys allowed!
Pompe Alliance
Pompe Meetings Upcoming
Pompe Friends – A group for adult patients 18+
Pompe – Diet and Nutrition – Ideas and Recipe Group
Hints and Tips for living with Pompe
Hope Travels