- By an initiative of the International Association of Muscle Glycogen Storage Disease (IamGSD), an international workshop was organised in the form of several digital meetings to provide a document as a resource for clinicians regarding current best practice related to diagnosis and management of Glycogen Storage Diseases (GSDs) V (McArdle) and VII (Tarui).
- On 1–3 June 2018, the 236th European Neuromuscular Centre workshop was held in Hoofddorp, The Netherlands, to discuss the issue of bone protective therapies in Duchenne muscular dystrophy (DMD), in particular, the feasibility of developing clinical trials. Twenty-six delegates, that included 19 experts in the neuromuscular and bone clinical and research fields, three representatives from patient organizations, two adults with DMD and two representatives from industry, attended this workshop.
- Twenty participants, including one patient representative, from 9 countries (UK, Spain, France, Sweden, Finland, Denmark, Italy, Germany and USA) attended the workshop, the aims of which were to agree on the best practice strategies for diagnosis and management of McArdle disease (GSDV) and related rare glycolytic disorders of skeletal muscle.
- The EUROMAC consortium was funded by the European Union in 2013 to develop a network and registry for McArdle disease and related disorders. EUROMAC partners are from 13 European centres and also include the USA and Turkey. The aims of the registry are to improve diagnosis and care for people living with these rare disorders and to provide a platform for future clinical trials . On 11–12 July 2014, an exercise testing workshop took place in Madrid, Spain, and was attended by 28 health professionals working in the field of McArdle disease from 8 countries and 13 people living with McArdle disease from 6 countries.
- Fifteen clinicians and basic scientists from six countries convened on 8th and 9th November 2002 in Naarden, The Netherlands for the 2nd ENMC sponsored Workshop on Multi-minicore Disease (MmD). The 1st ENMC sponsored workshop on MmD in May 2000 had lead to collaborations between the participating groups, resulting over the ensuing 2 years in a rapid advance in the understanding of this autosomal recessively inherited congenital myopathy. The main objective of this workshop was to discuss the recent identification of two genes (RYR1 and SEPN1) involved in at least two of the four MmD phenotypes that had been defined during the previous MmD consortium meeting.