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.




10 - 14 February, WORLD Symposium. 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.

28 February, Rare Disease Day. The rarest day in the calendar and an opportunity to "Think Rare".

28 - 30 February, EPOC Annual Meeting. 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).


15 April, International Pompe Day. Look out for the International Pompe Association's initiatives on their website: www.WorldPompe.org.


16 August, Ride London-Surrey 100. Annual cycling event; 100 miles through London and around the Surrey Hills. Please contact Allan Muir if you would like a charity place or if you have won a ballot place and would like to join our team.



3-5 September 2019. SSIEM 2019, Rotterdam

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.


25-27 October, 2019AMDA/IPA Patient and Scientific Conference 2019, San Antonio, Texas


  • 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.


14-16 November, IGSD 2019, Porto Alegre, Brazil.

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