Diary Of Events

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.

2020

August

  • *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

February

  • Rare Disease Day

    Start Date: 28th February

    The rarest day in the calendar and an opportunity to "Think Rare".

  • 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).

  • 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

  • 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

  • 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

  • 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.