Czech conference on multidisciplinary care for patients
with spinal muscular atrophy

16 - 18 Sep 2011

České Budějovice, Czech Republic

Conference "Multidisciplinary care for patients with neuromuscular diseases, in particular patients with spinal muscular atrophy (SMA)"

On 16-18 September, the Faculty of Health and Social Studies in České Budějovice, Czech Republic, hosted a conference dedicated to the multidisciplinary approach to caring for children with neuromuscular diseases and in particular spinal muscular atrophy. The aim of the conference was to present the latest research findings and new approaches to multidisciplinary care.

The conference was organised by the Kolping Family Smečno, a civic association and member of TREAT-NMD that provides social services and support to families of children with SMA. Additional expert input was provided by the Faculty of Health and Social Studies in České Budějovice and the Children´s Neurology Department of the 2nd Medical Faculty of University Hospital Motol in Prague. Dr Miluše Havlová was responsible for expert supervision of the conference, which also received sponsorship from the Sirius Foundation.

190 experts attended from various fields involved in the care for patients with neuromuscular diseases, including medical specialists, nurses, physiotherapists, ergotherapists, speech therapists, specialist learning support workers, and social workers.

Twenty five families with children suffering from neuromuscular disease also attended the conference, enabling the parents to discuss their experiences and views of complex care.

A special guest at the conference was  Prof. Dr. Louise Simard  of Manitoba University in Canada, who pointed out the importance of screening for neuromuscular disease in newborns.

The accompanying programme included a social evening in the Arpida children’s  centre, a fund-raising performance of Pinocchio, and a photographic exhibition. Direct care for children with neuromuscular diseases was provided for the duration of the presentations by assistants, and the children were treated to a psycho-relaxing and therapeutic programme (Health Clown, PC niche, music therapy, logotherapy, canistherapy, creative workshops, etc.).

The conference programme as well as further information about projects supporting children with spinal muscular atrophy can be found at http://www.dumrodin.cz.