ÄLTERE NACHRICHTEN 

Here we archive news stories which have appeared in the news feature on our home page.
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Tag der Seltenen Erkrankungen

Lernen auf einem Wanderkurs in Kalifornien

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Supermacht-T-Shirts

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Covid-19 Pandemie

CLINICAL PRACTICE GUIDELINES PUBLISHED

December 2021

A huge landmark in the progress of the understanding and treatment of GSD5 & 7 has been passed. The Clinical Practice Guidelines for these conditions, prepared by an international team of 18 clinicians, researchers and patient advocates led by IamGSD, has been published in Neuromuscular Disorders, the official journal of the World Muscle Society December issue. The paper and Supplementary Material are available free under Open Access.

CLINICAL PRACTICE GUIDELINES ACCEPTED

October 2021

An international team of expert clinicians and researchers, led by IamGSD President Dr. Stacey Reason, has agreed Clinical Practice Guidelines for GSD V (McArdle disease) and GSD VII (Tarui disease). These diagnostic and management recommendations have been accepted by Neuromuscular Disorders, the journal of the World Muscle Society.  

AGSD US CONFERENCE

September 2020

Held online due to Covid, the dates were from September 10, registrations closed September 15. For those who registered all presentations remain available until October 31. For everyone else our five presentations remain available on our YouTube channel.

INFO ON COVID-19 CORONAVIRUS

March 2020

Many of us are feeling anxious as we navigate the uncertainty of COVID-19 (coronavirus).  We share some information to help everyone with a muscle GSD through these difficult times.

GLOBAL WALKING WEEK 2020

December 2019

The 7th annual Global Walking Week will be held Friday 16 to Saturday 22 May 2020 inclusive, encouraging us all to get moving, raise awareness and maybe even raise some funds. 

IGSD2019 BRASILIEN ANKÜNDIGUNG

2. März 2019

Die nächste große internationale GSD-Konferenz soll 2019 in Brasilien stattfinden. Näheres demnächst!

WANDERKURSE

11. Februar 2018

Der diesjährige Wanderkurs in Wales findet vom 21. bis 28. August im Brecon Beacons National Park, Südwales statt. Die Veranstaltung für Kinder und Eltern vom 17. bis 20. August ebendort.

TRAINING SUPPORT PAGE LAUNCHED

December 2021

Our new page for Training Support is now made public in its final draft form. The page has the new “At the gym” leaflet and other resources intended to support physical therapists and personal trainers who are assisting people with McArdle’s. Feedback is requested by January 31 in order to assist us to complete the final versions of these resources.

GSD3 INFOGRAPHIC LAUNCHED

September 2021

Recently IamGSD shared an online global survey for GSD3 on our website. The survey has been finalized and much of the results are captured in an infographic, publicly available now. Go to our GSD3a page for more details and a link to download a PDF of the survey report.

COVID-19 VACCINATION

May 2020

Please refer to the vaccine distribution plan for your country/local region. To the best of our knowledge, there is no reason why COVID-19 vaccines should cause any particular issue to someone with a muscle GSD. Please consult your primary physician for individual guidance.

LAUNCHES FOR RARE DISEASE DAY

February 2020

We have three amazing launches for Rare Disease Day – a brand new patient registry for North America, a “Get Moving” campaign and an offer of T-shirts, sweatshirts and goodies (closes 23 March).

NEW RESOURCE ON GENE THERAPY

November 2019

The American Society of Gene and Cell Therapy has launched a video of their webinar: “Gene Therapy: Yesterday, Today, and Tomorrow”. It is an interesting introduction to this important subject.

INFO ZU EXZELLENZZENTREN

1. März 2018

Ein Kompetenzzentrum ist die umfassendste Plattform für McArdle-Patienten hinsichtlich:

aktueller Therapien und Methoden,

fundierter Beurteilungen,

genauer Diagnosemethoden, relevanter Information und Beratung, fachübergreifender Unterstützung, enger Verknüpfung von Primär- und fachärztlicher Versorgung.

“Centre of Expertise: Comprehensive Care for Patients with McArdle Disease”, Journal Rare Disorders: Diagnose & Therapie 2018, Band 4 Nr. 1: 4.

NEW LEAFLET ANNOUNCED
“AT THE GYM”

November 2021

We are working on this new leaflet for physical therapists and personal trainers who are asked to help people with McArdle’s get exercising. The leaflet avoids being daunting for a trainer who does not know our condition. It is backed by a webpage “Training support” which provides extra resources. It is in pilot, with launch expected January. DRAFT AVAILABLE NOW!

GLOBALE WANDERWOCHE 2020

30. November 2019

Die 7. jährliche Globale Wanderwoche findet Freitag, 16. bis einschließlich Samstag, 22. Mai 2020 statt - Motivation zur Bewegung, Bewußtseinsförderung und eventuelle Spendenquelle.  

PODCAST ABOUT CoRDS REGISTRY

April 2020

CoRDS launch a 28 minute podcast with Stacey and Andrew, talking about muscle GSD and the CoRDS Registry. Listen, and then join the registry, to help everyone but especially those yet to be diagnosed. 

WANDERKURSE 2020

5. Januar 2020

Wales (AGSD-UK) 6. bis 13. August     - Deutschland (SHG) 18. bis 22. September

USA (IamGSD), parallel zur US-Konferenz der AGSD vom 11. bis 12. September (vorläufig).

WANDERWOCHE 2019

16. April 2019

Die 6. jährliche Wanderwoche findet Montag, 20. bis Sonntag, 26. Mai 2019 statt - Motivation zur Bewegung, Schärfung des Bewußtseins und eventuell eine Möglichkeit, Spenden zu sammeln.

ERWARTETE FORSCHUNGS-ERGEBNISSE

28. Februar 2018

Für 2018 erwarten wir die Veröffentlichung der Ergebnisse von drei Studien - der ketogenen Studie in Deutschland, der Triheptanoin-Studie in Dänemark und Frankreich und der Natriumvalproat-Studie in Dänemark und Großbritannien.