"Paediatric neurology" is primarily the specialty field in paediatrics dealing with diseases like NCL. Therefore this field is a main focus of educational activities of the NCL Foundation. The emphasis here is on organising medical continuing education courses.

 

For the first time on Saturday, 23 April 2005, the medical continuing education course "Neuronal Ceroid Lipofuscinoses" was given during the 31^st Annual Meeting of the Society for Paediatric Neurology in Erlangen. Because the course was officially recognised by the Bavarian Medical Association, every participant could be awarded two continuing education points. The course covered the diagnostics and therapy options for all NCL forms. The medical course leader was Dr. Steinfeld from Gottingen.

 

17:15 - 17:25: Welcome and presentation of the NCL Foundation (Dr. Frank Stehr, NCL Foundation); 10 min talk

17:25 - 18:05: "Diagnosis of infantile and late infantile neuronal ceroid lipofuscinoses (NCL) and its atypical forms" (Dr. Robert Steinfeld, Gottingen); 30 min lecture + 10 min discussion

18:05 - 18:45: "Diagnosis of juvenile NCL and selected examples of palliative treatment options" (Prof. Dr. Alfried Kohlschütter/ Dr. Angela Schulz, Hamburg); 30 min lecture + 10 min discussion

 

A total of 27 participants were welcomed and many others showed interest in the course. Because there is apparently an urgent need for action, the Foundation plans to offer more continuing education courses regionally and nationally.

 

For example, Prof. Brandl (University Hospital Jena), organiser of the Annual Meeting of Paediatric Neurologists taking place in 2008, has promised the Foundation an NCL lecture series or continuing education unit.