At December 7, 2013 Pompe patients from all over Denmark came together in Copenhagen at their first Pompe workshop. Anne-Grethe Lauridsen of the Gaucher Association Denmark organised this workshop after she was approached by Pompe patients for more information on Pompe disease.
Dr. Allan Lund (Copenhagen University Hospital) gave a presentation on Pompe disease and provided the latest medical and scientific information. Muskelsvindfonden (Danish Neuromuscular Disorder Association) and the Danish Rare Disease Organisation presented on their mission, goals and work. The International Pompe Association (IPA) presented on the importance of having a good professional patient organisation, having good collaboration and having a strong network.
It was a very succesful workshop where much information was shared in a warm and open atmosphere.
A well attended Pompe workshop in Copenhagen, Denmark.