Hungarian standards of care for DMD workshop report and update

18 Apr 2012

Budapest, Hungary

Hungarian TREAT-NMD partners have been directly involved in three highly significant developments in the neuromuscular field in Hungary this month: the establishment of a National Neuromuscular Centre, a presentation to parliament, and the first CARE-NMD workshop on DMD care.

An official agreement was signed on Monday 16th April which formally established in Budapest the first specialist Hungarian Neuromuscular Centre. Although collaboration has been on-going for some time, the agreement - between the Hungarian National Institute for Environmental Health (NIEH), Semmelweis University 2nd Paediatric Clinic, Szent Janos Hospital and Northern-Buda Corporated Hospitals - Rehabilitation Unit, National Institute of Children's Health, Misko Foundation and the Healing Goodwill Foundation for Children with Neuromuscular Disorders - provides a formal basis for future cooperation. As the first specialist centre in the country, it will also form part of a network of expert centres to be developed over time in line with European recommendations on Reference Networks; it is hoped that a second centre in Szeged will be inaugurated soon.

The very next day, a hearing was held before the Controlling Subcommittee of the Health Committee of the Hungarian Parliament regarding neuromuscular care. Expert evidence to the committee was provided by V. Karcagi (Head of the Genetic and Diagnostic Department at NIEH), M. Garami (NIEH, CARE-NMD database manager), A. Herczegfalvi (Head of the Department of Neurology, Semmelweis University Paediatric Clinic 2), L. Tímár (Genetic Counsellor, National Institute of Child Health) and J. Beres, National Institute for Health Development - Department of National Registry of Congenital Abnormalities. In the planning stages for some time, the meeting offered the opportunity to highlight the need for additional resources to support neuromuscular care and how this relates to wider European Rare Disease initiatives. The next step is a parliamentary interpellation (No. I/4317) to the Hungarian Minister of State for Health at the Ministry of National Resources* by the chairman of this Committee, who will ask for financial resources to support the first Hungarian NMD centre.

Finally, on Wednesday 18th April, the first Hungarian CARE-NMD Workshop was held in Budapest. It provided expert training on DMD care, with international speakers including Dr Janbernd Kirschner, Prof Enrico Bertini, Prof Thomas Sejersen and Dr Birgit Steffensen, as well as national speakers from the CARE-NMD consortium. It was well attended, with approximately 40 Hungarian paediatric neurologists, neurologists, paediatricians, physiotherapists, representatives of patient organisations, and other specialists attending. The organisers would like to thank everyone who attended for their support, and look forward to working with them to further develop Hungarian the neuromuscular field.

* 27/04/12 A previous version of this article stated "Hungarian Health Minister". This has been corrected to "Hungarian Minister of State for Health at the Ministry of National Resources".