Implementation Workshops

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.

Past Events

Hungarian Implementation Workshop

22 August 2012 at the children’s resort Helyszín: Dunabogdányi near Budapest, Hungary

Family workshop

Organizer: NIEH

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

Organizer: BGNMDS

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

Family workshop

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

Family workshop

Organizer: WUM

Participants from CARE-NMD: Anna Kaminska, Anna Lusakowska, Anna Kostera-Pruszczyk (WUM)