European Glut1 Conference in 2021 changed to digital event

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Due to the ungoing uncertainty around the Corona virus pandemic, the organisers have decided to switch the upcoming 3rd European Glut1 Conference to a digital format. While this means that we will miss out on personal meetings, it will be much easier to plan for the conference now as we can be certain this important … Read more

Glut1 Parent’s Fundraiser hits target within 12 hours

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Maria Barthel’s annual fundraisers have become a bit of a tradition for the German-speaking Glut1 community. Every year in the run-up to Christmas, the mother of a 4-year-old girl with Glut1 Deficiency Syndrome launches a fundraising initiative that also serves to shine a spotlight on life with the condition – and this year she set … Read more

Glut1 Deficiency Given Its Own ICD-10 Code

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Glut1 Deficiency has been assigned its own ICD-10 Code: E74.810 which will be effective from the beginning of October 2020. ICD stands for “International Statistical Classification of Diseases and Related Health Problems” (ICD) and is a medical classification system used by the World Health Organisation. Having a distinct code will make it easier to track … Read more

Consensus Paper for Glut1 Deficiency available

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This new consensus paper gives an overview over the current state of research on Glut1 Deficiency. It also provides a consensus statement on the current standard of care. A lot of work has gone into this and we are tremendously grateful to all who contributed. You can read the full paper here.

New membership option

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When the European Glut1 Organisation was first set up, a variety of options for membership were discussed in some detail and eventually a 2 option model was decided on that provided for 2 types of membership: Non Profit Organisation Non profit Organisation Members are all organisations, associations or other entities who adhere to European Glut1 … Read more

European Glut1 Conference Postponed to 2021

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As the Covid 19 situation in Europe is still critical and imposes severe restrictions on medical meetings, the organisers have decided to postpone the European Glut1 conference until June 2021. The current plan is to keep the original program and venue in Lille, but more details will be announced in the future. This is sad … Read more

Glut1 in the News

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Master students from the Journalism program at the Universit√† IULM in Milan publish the magazine Quindi. The latest issue covers different aspects of the coronavirus pandemic and one article talks about the additional challenges the lockdown causes for patients with rare diseases. Our president Massimiliano Barone spoke to them about how Glut1 patients are affected … Read more

Online Meeting for European Glut1 Community

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The current situation means many things we take for granted have been put on hold, cancelled or postponed (not least the European Glut1 Conference many of us were looking forward to…) But there are also plenty of new opportunities and we would like to invite you to the first ever Online Meeting of the European … Read more

FAQ Glut1 Deficiency and COVID-19

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The Glut1 Foundation recently organised an Online Questions & Answers Session on Coronavirus and Glut1 with Dr Juan Pascal. A summary of the answers can be found on their website here: https://www.g1dfoundation.org/faq-on-covid-19.html

European Glut1 Conference Postponed

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As you know the coronavirus pandemic imposes severe restrictions on travel and movement at the moment. This makes it very difficult to plan anything for the next few months and the Organising Committee has therefore decided to postpone the 3rd European Glut1D Conference to September 18-19, 2020. The French Satellite symposium will be also postponed … Read more