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LEBEN VERBESSERN

Lesen Sie unsere neueste Patientengeschichte von Aidan.

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

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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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May 2022

THREE NEW LEAFLETS LAUNCHED

We have launched three new leaflets in our series:
At hospital (support for McArdle people and emergency doctors when needing to attend hospital due to an episode of rhabdomyolysis).
At the gym (part of our Training Support package for physical therapists and personal trainers).
At the moment (for McArdle people and their partners). 

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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.

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May 2022

GLOBAL WALKING CHALLENGE

MAY 21st to 27th

An incentive to get moving, with our 9th Global Walking Challenge. Join us in this challenge to walk the length of long distance trails around the world! You join in virtually, walking wherever you are, and sending in your mileage each day. Send us comments and photos as well! We will add the miles all together and tick off some amazing trails. The big challenge is to culminate with finishing the California Coastal Trail at 1931 km (1199 miles).
 

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June 2022

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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April 2022

UPDATE ON REN001 PHASE 1B TRIAL

A Reneo Pharmaceuticals, Inc. update included details on their trial in patients with McArdle disease. This showed an adequate safety profile with no serious adverse events. After 12 weeks of treatment, participants showed an average increase of 38.5% in fat oxidation compared to baseline. However, the increase in fat oxidation did not result in major changes in the distance walked during the 12-minute walk test and no corresponding changes in heart rate, fatigue or pain were noted. Reneo does not plan to pursue a Phase 2 study. They will continue to partner with us to further our advocacy and education mission.

NACHRICHTEN

NACHRICHTEN

PUBLIKATIONEN

 

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

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.

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.

 

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.