Local, national and International events all contribute to the kaleidoscope of information exchange between and within communities. Here we provide a schedule of meetings and events to support the Pompe community. Fundraising events will also be highlighted.
Annual cycling event; 100 miles through London and around the Surrey Hills. Please contact Allan Muir if you have won a ballot place and would like to join our team; all of our charity places are now taken.
Look out for the International Pompe Association's initiatives on their website: www.WorldPompe.org.
Guest specialist: Steven Dando, Lecturer in Physiotherapy, School of Healthcare Sciences, Cardiff University, Wales.
The rarest day in the calendar and an opportunity to "Think Rare".
An important meeting of the European Pompe Consortium; a large group of European clinicians working on projects to improve clinical practice for Pompe disease. Allan Muir will be attending to represent the International Pompe Association (IPA).
We expect to have a representative attend this global Lysosomal Disease symposium to hear the latest scientific and clinical developments and to network with other national charities, healthcare professionals and industry representatives.
Sadly not attended by Pompe Support Network, but we were present in spirit through poster presentations 03 and 06 which are co-authored by our chairman Allan Muir. IGSD2019 Posters
Including:
Allan Muir attended this series of meetings as vice-chair of the International Pompe Association. Please read Allan's visit report here.
Our Chairman Allan Muir attended the 2019 symposium of the Society for Study of Inborn Errors of Metabolism (SSIEM) on behalf of the UK LSD Collaborative. Read his summary report here.