CARE-NMD ran Implementation Workshop in each Eastern European Partner Country, as part of the activities co-ordinated by the Danish partner to asses and improve quality of life for patients living with DMD.
Hungarian Implementation Workshop
22 August 2012 at the children’s resort Helyszín: Dunabogdányi near Budapest, Hungary
Participants: Some 40 family members, representatives from the Hungarian DMD patient organization Gyógyító Jószándék (healing goodwill) and Misko DMD Foundation
Participants from CARE-NMD: Marta Garmi (NIEH), Jes Rahbek (RCfM), Hanns Lochmuller (UNEW).
Bulgarian Implementation Workshop
17-20 September 2012, Sofia, Bulgaria
Two family workshops – one for children with DMD and their families, one for young men with DMD and their families
Participants: 10 children and a total of 30 family members attended the first workshop, and 16 young men and a total of 42 family members attended the second workshop; also representatives from the patient organization Bulgarian Association of Neuromuscular Diseases.
Participants from CARE-NMD: Ann-Lisbeth Højberg and Jes Rahbek (RCfM)
Czech Implementation Workshop
22-23 March 2013, Mikulov, Czech Republic
Organizer: FN Brno in collaboration with Parents Project Czech Republic
Participants from CARE-NMD: Jes Rahbek (RCfM), Petr Vondracek and Lenka Mrazova (FN Brno)
Polish Implementation Workshop
13 March 2013, Warsaw, Poland
Participants from CARE-NMD: Anna Kaminska, Anna Lusakowska, Anna Kostera-Pruszczyk (WUM)