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Paediatriciants and Neuropaediantritians

NCL is one of the most common types of neurodegenerative childhood diseases.

Paediatricians and neuropaediatricians treat sick children and inform their families on childhood dementia and the workings of the illness.

To enable paediatricians to do this, talks, further education and publications are used, including information written in co-operation with NCL experts.


Further Education / Talks

Annual Conference of the German Society for Child and Youth Medicine (Jahrestagung der Deutschen Gesellschaft für Kinder- und Jugendmedizine.V.)

Since 2005, the NCL Foundation has regularly been represented at the Annual Conference of the German Society for Child and Youth Medicine. It had organised several conferences at this event. On the theme of “Neurogenerative Diseases in Youth and Children”, the research leader, Dr. Frank Stehr, gave a talk on strategies for further education in the area of rare diseases using the example of juvenile NCL to an audience of over 70 listeners.

In 2011, The NCL Foundation also organised another symposium. The focus was on, “Childhood Dementia”. Different experts from all over Germany met in Düsseldorf on 13. September 2013 for this very reason. Themes included how to deal with childhood dementia, as well as dementia with other illnesses of grey and white matter.

Research leader of the NCL Foundation, Dr. Frank Stehr, reported on the strategies and measures taken by the organisation in the struggle against NCL.


Rare Disease Day

On 29th February 2012, the 5th Rare Disease Day, the NCL Foundation held training on the theme of, “Neurogenerative Diseases in Childhood and Youth”, in co-operation with the clinic and outpatients clinic for childhood and youth medicine of the University of Cologne and the Centre for Molecular Medicine of the University of Cologne. The event was accredited with 3 Further Education Points by the Academy of Medical Further Education and Training of the Medical Council for North Rhine.

(Picture: Dr. F. Stehr, Prof. J. Dötsch, Prof. T. Benzing, Prof. R. Martini,

Prof. T. Langmann, Prof. R. Steinfeld, Dr. O. Fricke, Dr. J.-Chr. von Kleist-Retzow. Credits: Christoph Wanko, Uniklinik Köln)


NCL Information Leaflet

The NCL Foundation provides information on different doctors, especially paediatricians, in its information leaflet. Through working in combination with firms like HEXAL and Ratiopharm, ample leaflets have been passed onto paediatricians personally, resulting in the presence of the leaflets as a free resource at various doctors conferences, including those in Fulda, Tubingen and Berlin.


NCL in specialised Media

An article on NCL and the work of the NCL Foundation was published in the news section of the specialist magazine, “Pädiatrix” (Edition 1/2012). In edition 38 (2007) Nr. 9 of the doctor’s journal “Kinder- und Jugendarzt” (Paediatrician) an NCL training publication entitled, “The Neural CeroidLipofuscinosis” was published. This publication was implemented by the NCL Foundation. The same edition featured another article about the work of the NCL Foundation.


This German - English translation was done by the translators Tizzy Mann, Andrea Murphy, Kate Humby and Marcia Neff for the PerMondo initiative that involves providing free translations for NGOs. PerMondo is sponsored and run by the translation agency Mondo Agit.