Are you a professional working in the health sector? Do you want to find out more about the registry and the dieases that will be included in our joint effort?
We have summarized in a printer-friendly PDF all you need to know about the project, who we are, and that you need to do in order to take part in this registry.
List of Glycogenolitic Disorders Specialized Centres and professionals identified by country
The project kicked off this Tuesday, 14 May at the Jean Monet Building (European Commission) in Luxembourg, when the partners sat together with one representative of the European Commission to plan the work to be done over the next 3 years of the project.
As well as McArdle Disease, EUROMAC also covers related muscle conditions that are even more rare.
Check out the views and feelings from patients affected by MCArdle’s Diseases and other forms of rare glycogenoses.
A higher aerobic fitness and an active lifestyle are associated with a higher workload eliciting the so-called SW phenomenon in patients with McArdle disease, which has a positive impact on their exercise tolerance during daily living.INFO
To highlight the benefits of a partnership between patient advocacy organizations (PAO) and clinical researchers in order to clinically study the prior anecdotal patient experience of utilizing a low-carbohydrate ketogenic diet (LCKD) to manage McArdle disease.INFO
To explore the potential of a low carbohydrate ketogenic diet (LCKD) to counter physical activity intolerance, pain and muscle damage for glycogen storage disease (GSD) V and VII, and highlight the realistic possibility that nutrition could be key.INFO
In this study we extensively describe phenotypic and genotypic features of a large cohort of people with McArdle disease, all attending the Highly Specialized McArdle Disease and Related Disorders service at the National Hospital for Neurology and Neurosurgery, London.INFO
We are researchers in the field of neuromuscular disorders who investigate, at the clinical and research level, on glycogen storage disease type V (GSD V) (OMIM® number 232600), also known as McArdle Disease and other related ultra-rare muscle glycogenoses. We represent twenty institutes from across Europe, plus Turkey and the US, which make up the founding consortium of EUROMAC.
The aim of the project is to identify as many patients as possible across all European countries and to collect important clinical and epidemiological data. We hope to create the largest international cohort of people with such rare conditions.INFO
You will receive news of EUROMAC’s work and reports of any studies and trials undertaken by partner institutes based on information from the registry.INFO
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