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McArdle’s support

Monday, 2nd August 2021

We haven’t spoke in quite awhile and you are my go to person when it comes to questions about McArdle’s. I do appreciate you going out of your way to get information for me. MM, USA

Staying in touch

Wednesday, 30th June 2021

Thank you for staying in touch with me. I’m deeply appreciative of all you do for everyone with a GSD. Stan, USA

Mental Wellbeing and Pompe Disease Booklet

Tuesday, 15th June 2021

It seems to have something for everyone and I particularly liked the toolkit and Annabel’s story.  It is lovely, detailed and the feedback from patients has all been very positive. All the models of therapy mentioned are ones I advocate and I am sure it will benefit...

Thank you so much Jane and Julie

Tuesday, 27th April 2021

I am over the moon with the PIP decision and I cannot thank Jane & Julie enough for all the great help you have given me. I am sure the fact the award is given until December 2030 is a sign of the in depth work that was done by yourselves. Thank you so much for...

IOPD Schools information booklet

Wednesday, 21st April 2021

Thank you, the IOPD Schools information booklet is brilliant! Definitely give us other things to think about and will provide support for explaining Pompe to the schools. TB, Mum to a lovely IOPD toddler