Drumroll please...we’re excited to share our very own re-record of This is Me from The Greatest Showman to unify the voices & call for a timely diagnosis for the 1 in 17 people living with a #RareDisease in the UK 🎵 #RareDiseaseDay #ThisIsRareThisIsMe bit.ly/3SwWsoG

Happy Rare Disease Day! To help raise awareness of rare diseases, Pompe Support Network recently took part in a new community singing project, 'This is Rare', held at Abbey Road Studios in London: pompe.uk/pompe-news/pom… #Thisisrarethisisme #Rare #RareDiseaseDay2023 #AbbeyRoad

International Pompe Day Meeting @ NeuroMusclar Centre, Cheshire. - Saturday 15th April 2023 - 10am to 4pm BST We will be joined by Prof Mark Roberts, Consultant neurologist at the Salford Royal hospital. Click below for the Registration form: pompe.uk/pompe-news/pom… #Pompe

Pompe Webinars from AMDA Date: Tuesday, March 28, 2023 Time: 7pm BST Link to the Webinar description and registration page: amda-pompe.org/teleconference… The USA patient organisation AMDA hold very interesting webinars throughout the year. The next one concerns two important topics.

The International Pompe Association (IPA) is excited to announce it’s plans for International Pompe Day April 15th 2023. This year the focus is on raising awareness of the importance of movement and require input from members of the Pompe community. pompe.uk/pompe-news/int…

Happy International Pompe Day to the global Pompe community! We are having a wonderful time at our Pompe spring meeting at the NeuroMuscular Centre catching up with faces old and new - full report to follow soon! We hope you too are marking the day in style. #Pompe #community

Click the website link below to read how the Pompe Support Network marked International Pompe Day 2023 at the @NMCentre, Winsford with guest speaker Professor Mark Roberts (Consultant neurologist at the Salford Royal Hospital) pompe.uk/pompe-news/int… #Pompe #rare #community

Pompe Support Network at the WORLD Symposium 2023 Watch our short film celebrating the WORLD Symposium 2023 held in Orlando, Florida. Pompe Support Network represented the UK Pompe community at the annual event. pompe.uk/pompe-news/pom…

Maze Therapeutics Announces Exclusive Worldwide License Agreement with Sanofi for MZE001 Maze Therapeutics has announced an exclusive licensing agreement with Sanofi for MZE001, an oral substrate reduction therapy for the treatment of Pompe disease: pompe.uk/pompe-news/maz…

Living with Pompe disease: ‘I could be still walking unaided if diagnosis hadn’t taken 17 years’ Zoe Baillie speaks to the The Independent of how she started having symptoms of Pompe in her late teens, but didn't receive her diagnosis until her mid-30s. pompe.uk/pompe-news/liv…

*Family support group gathering at the NeuroMuscular Centre, Winsford* The Neuromuscular Centre will be hosting a summer gathering on Saturday 22nd July 2023 which is open to families and charities affected by neuromuscular conditions. pompe.uk/pompe-news/fam…

Would a Virtual Reality Demonstration Day be useful to you? We are hoping to host a VR demo day but first we'd like to know if this would appeal to you? Would you be willing to try out the VR world to see the mental & physical health benefits? facebook.com/PompeSupportNe…

Did you know you can help support us just by a click of a button? Going via Give as you Live 💙❤️💚 before internet shopping means the charity will receive donations at no cost to you! Plus this week you can win vouchers and spot prizes! Click here to read more: giveasyoulive.com/join/pompe

The @NMCentre have released more details about the family support group summer gathering on Saturday 22nd July 2023. pompe.uk/pompe-news/fam…

Patient Registries for Pompe Disease The International Pompe Association would like your assistance in conducting a brief (only a few questions) survey on the topic of Patient Registries for Pompe Disease. This should not take no more than 10 minutes: pompe.uk/pompe-news/pat…

We now have a JustGiving page! You can now fundraise or simply donate to Pompe Support Network via JustGiving. Please follow the link below. pompe.uk/pompe-news/we-… #pompe #JustGiving #fundraise #donate #community

The book we have been working on for the last 12 months, “This Little Thing I Do”, has now been printed and a copy sent to each UK subscriber. If you haven't yet received yours or would like to receive a copy please click the link to find out more: pompe.uk/pompe-news/thi…

Got your holiday travel insurance yet? Travelling whilst living with a disability can be difficult and finding travel insurance can add to the frustration. We've compiled a list of insurers to help you to tick off your holiday to-do list. pompe.uk/support-and-ad…

Short UK LOPD exercise survey - aimed at the LOPD part of the UK community. We are collaborating with Stephen Dando, a specialist physiotherapist for Pompe at the National Hospital, London, to determine what exercises Pompe individuals are doing: pompe.uk/pompe-news/sho…