Diary Of Events
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.
2021
May
April
February
2020
November
August
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*POSTPONED* - Ride London-Surrey 100
Start Date: 16th August
*POSTPONED DUE TO COVID-19 - TO BE RESCHEDULED IN DUE COURSE*
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.
April
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International Pompe Day
Start Date: 15th April
Look out for the International Pompe Association's initiatives on their website: www.WorldPompe.org.
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Zoom into Pompe - ZiP 002: Physical wellbeing
Start Date: 11th April
Guest specialist: Steven Dando, Lecturer in Physiotherapy, School of Healthcare Sciences, Cardiff University, Wales.
View the ZiP 002 webinar HERE
February
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Rare Disease Day
Start Date: 28th February
The rarest day in the calendar and an opportunity to "Think Rare".
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EPOC Annual Meeting
Start Date: 28th February
End Date: 29th February
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).
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WORLD Symposium
Start Date: 10th February
End Date: 14th February
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.
2019
November
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IGSD 2019
Porto Alegre, Brazil
Start Date: 14th November
End Date: 16th November
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
October
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2019AMDA/IPA Patient and Scientific Conference 2019
San Antonio, Texas
Start Date: 25th October
End Date: 27th October
Including:
- IPA Board meeting
- IPA Meetings with industry partners
- IPA Annual General Meeting
- The AMDA/IPA International Pompe Patient and Scientific Conference
- IPA Community Advisory Board (CAB) inaugural meeting with industry
Allan Muir attended this series of meetings as vice-chair of the International Pompe Association. Please read Allan's visit report here.
September
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SSIEM 2019, Rotterdam
Start Date: 03rd September
End Date: 05th September
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.