36th neuropaediatrics congress 2010
34th neuropaediatrics congress 2010

"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.

36th Annual congress of the organisation for neuropaediatrics 2010 (21.-25.9.2010) in Mannheim 

The neuropaediatrics were informed at the annual meeting of the German society in Mannheim about the newest developments in NCL treatment. The training seminar “Neuronale Ceroid Lipofuscinosis” took place on 25th September. Continuing professional education points were applied for at the medical association Baden Württemberg.  The agenda was as follows: 

1. Prof. R. Steinfeld: Clinical characteristics and treatment of NCL patients. 

2. Prof. B. Lorenz: Juvenile ceroidlipofuscinosis: An important differentiation diagnosis of the retina dystrophies during childhood. 

3. Prof. A. Gal: Laboratory diagnostics of the NCL.  

4. Dr. A. Richterich: Breaking Bad News: the joint consultation on the diagnosis lays the decisive foundation for cooperation between the family and the doctor. 

5. Dr. F. Stehr: Research promotion in the area of orphan diseases using NCL as an example. 

34th Annual congress of the organisation for neuropaediatrics. 

At the 34th Annual Congress of the Organisation for Neuropediatrics from 3^rd to 6^th April 2008 in Jena the NCL organized a workshop. This took place from 9:00 - 11:00 hours in lecture theatre 6. 

Chaired by Prof. Robert Steinfeld the following lectures were held: 

09:00 - 09:05 hours:    The work of the NCL Foundation (Dr. Frank Stehr, Hamburg)

09:05 - 09:35 hours:    The adult NCL (Prof. Dr. Albert C. Ludolph, Ulm) 

09:35- 10:05 hours:    Lysosomal enzyme defects as a source of NCL illnesses (Prof. Dr. Dr. Robert Steinfeld, Göttingen) 

10:05- 10:35 hours:    Juvenile NCL (Prof. Dr. Alfried Kohlschütter, Hamburg) 

10:35- 10:55 hours:    Palliative Psychopharmacology – possibilities for improving the quality of life for NCL patients and their families (Dr. Andreas Richterich, Hamburg)

10:55- 11:00 hours:    Discussion 

At the same time as the congress the NCL leaflets were automatically distributed to all participants. Additionally, the Foundation was represented on location by an information stand.

We would like to express our sincere thanks to the president of the Congress, Prof. Brandl, the lecturers and the congress organiser for the fact that this workshop took place. 

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.