PSN had a poster presentation on Thursday, 5 February entitled:
Supporting shared decision-making in Pompe disease: Making complex treatment evidence accessible for patients
There was a lot of interest from clinicians and the Pompe community around the world. The UK clinicians and nurses were very impressed with the Pompe Patient Guidelines which the poster referenced. We also discussed how other countries' healthcare professionals and advocacy organisations could adapt it to their own country, even if they do not have the same treatment options.
It was a great opportunity to learn more about research and meet industry partners, patient organisations and Pompe patients around the globe.
Click below to download the poster: