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McArdle’s walkers, Wales, August 2022

Join a walking course

LEBEN VERBESSERN

Willkommen bei IamGSD!

  

Unsere Informationen sind auf Englisch mit deutscher Option aufbereitet.

  

Auf der Schaltfläche „Sprachen“ erfahren Sie, wie Sie den Google Chrome-Browser mit Google Translate verwenden, damit Sie unsere Informationen in 100 Sprachen Ihrer Wahl lesen können.

  

Viele unserer gedruckten Publikationen sind neben Englisch auch in mehreren Sprachen erhältlich.

MUSKEL-GLYKOGEN-SPEICHERKRANKHEIT

KAMPAGNEN
Our campaigns of activity and awareness raising.

IAMGSD-Kampagnen zur Früherkennung von McArdle und anderen Muskel-GSDs, zur Übernahme internationaler Versorgungsstandards und zur Bereitstellung von Kompetenzzentren.

 

PUBLIKATIONEN

 

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IAMGSD bietet Informationen an, , um Menschen mit McArdle, ihre Familien, Schulen, Arbeitgeber und Ärzte zu unterstützen.

FORSCHUNG
Our research agenda for muscle GSD.

IAMGSD arbeitet daran, die Bedürfnisse von Betroffenen (McArdle und andere Muskel-GSDs) zu identifizieren und Forschungsaktivitäten anzuregen, zu fördern und zu unterstützen, um diesen Bedürfnissen gerecht zu werden.

 

KURSE

 

Learning management techniques on a walking course.

IAMGSD organisiert Wanderkurse, um Menschen zu helfen, ihre Kondition zu verbessern. Bisher fanden sie in den USA, Deutschland und in Großbritannien statt. Weitere Länder sollen einbezogen werden.

Main sections

NACHRICHTEN

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March 2023

TRETEN SIE DEM CORDS REGISTRY BEI

IamGSD möchte, dass jeder mit einer Muskel-GSD dem CoRDS-Register beitritt, das einen speziellen Abschnitt für uns hat (diejenigen in Europa können das Euromac-Register verwenden). Bitte lesen Sie CoRDS, hören Sie den Podcast und treten Sie dann online der Registrierung bei.

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December 2022

AGSD-UK CONFERENCE

The AGSD-UK conference is returning to the physical format for 2023, after two years of online equivalents during the COVID-19 pandemic. Branded “The Main Event”, the conference will be held near Loughborough in the Midlands over the weekend of 20/21 May. There will be a significant program for McArdle’s.  We are awaiting news of the AGSD US conference starting 23 June and are not sure whether there will be a McArdle’s program.

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February 2023

LEAFLET – AT PEACE WITH MCARDLE’S

We have published a new leaflet entitled “At peace with McArdle’s – ideas to help with mental well-being.” It is available now to browse online or to download a PDF. The leaflet draws on the experience of many McArdle people who perhaps have struggled with self-image, anxiety and/or depression, but have found their way to living positively with this disorder. When shared with family and friends, it will help them to understand the issues that we can face and guide them as to how they can help.

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October 2022

FUTURE LEADERS TRAINING COURSE

IamGSD is offering a new course in 2023 to train future leaders for the walking courses for people with McArdle’s and other muscle GSDs. It is hoped that this will lead to more courses being available in more countries around the world. A short presentation about the course is now available on our YouTube channel. For those that complete the course there will be a certificate, a manual, resources and support from IamGSD.

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January 2023

NEW RESEARCH PAPERS ON GSD5

Two new papers on McArdle’s have recently been published. They are: “Patient-Reported Experiences with a Low-Carbohydrate Ketogenic Diet: An International Survey in Patients with McArdle Disease” and “Toward An Understanding of Mcardle Disease: A Cross-Sectional Questionnaire Study”. IamGSD President, Dr Stacey Reason, was a co-author on the former paper and the lead author on the latter paper. Both papers have free public access and we are shortly adding details on our “Research papers” page.

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September 2022

INTERNATIONAL CONFERENCE ON GSD

There is a series of international conferences on glycogen storage disease held approximately every three years. IGSD2022 will be hosted by the AGSD US, starting on 20 October 2022. Due to the Covid pandemic this will be an entirely online event. The presentations will remain available until April 2023. See the conference website for more details and registration.

News
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