A CARE-NMD Workshop for specialists involved in DMD care was held in Sofia, Bulgaria on 4th-5th May.
Where available, PDF versions of presentations given at the workshop are provided below:
The workshop was organised by local partners in the CARE-NMD project, with international speakers including Dr Janbernd Kirschner (University Clinic Freiburg) and Professor Hanns Lochmuller (Newcastle University) as well as national speakers from the CARE-NMD consortium.
More than 100 Bulgarian specialists in different fields attended, including neurologists, paediatric neurologists, paediatricians, physiotherapists, cardiologists and pulmonologists, psychologists, representatives of patients organizations and of the State agency for people with disabilities. Neuromuscular specialists from Serbia and Romania also made the journey to Sofia, which was addressed by the Bulgarian Minister of Healthcare.
Partial sponsorship for the event was received from the pharmaceutical industry – Pfizer, GlaxoSmithKline and Sanofi-aventis - Genzyme division.
The workshop took a similar format to the recent Budapest workshop with sessions covering different areas of best-practice care for Duchenne muscular dystrophy, in particular the importance of a multidisciplinary approach to care and treatment.
Areas of particular relevance to the Bulgarian audience included psychosocial care, and the organisation fo home respiratory programmes, issues which were further explored at a meeting of the Bulgarian Neuromuscular Disorders Society which immediately followed the second day of the workshop.
This meeting also discussed plans to lobby the authorities for additional support for neuromuscular care, and the approval of updated national consensus of specialists on the diagnosis, prevention and treatment of neuromuscular disorders.
Very positive feedback was received from workshop attendees, and the event strengthened connections within the neuromuscular community in Bulgaria. The organisers would like to thank all those who attended.