Paediatricians
NCL is a fatal childhood disease. Paediatricians, but often also paediatric neurologists, treat these young patients.
To educate specifically paediatricians lecture series, publications and continuing education courses have been initiated. In addition, information materials written in collaboration with NCL experts are distributed.
106th Annual conference of the German Organisation for Child and Youth Medicine e.V. (DGKJ), 18.02.2010 in Potsdam
On 18th September the NCL Foundation organised a symposium in Potsdam on lysosomal storage diseases. Prof. Steinfeld (Göttingen), Prof. Beck (Mainz) and Prof. Marquadt (Münster) were secured as lecturers.
105th Annual conference of the German Organisation for Child and Youth Medicine e.V. (DGKJ), 03-06.09.2009 in Potsdam
On 5th September an NCL symposium was held at the DGKJ 2009 in Mannheim by the NCL Foundation. Many thanks to the scientific coordinator, Mr. Prof. Böhles, who enabled us to host it.
You will find the programme of the NCL lecture series here (~25KB)
You will find a summary of the symposium here (~27KB)
101st Annual Meeting of the German Society for Childhood and Adolescent Medicine, 29.9 to 2.10.2005 in Bremen
The NCL Foundation was present at this conference with a stand and offered physicians instruction and informative materials. In addition, the NCL Foundation was able to initiate a lecture series on neuronal ceroid lipofuscinoses. The speakers were Angela Schulz and Alfried Kohlschütter (Hamburg), Stephan Storch (Hamburg) and Robert Steinfeld, (Gottingen). More than 30 participants gathered in the Roselium Salon on Sunday at 11 a.m. to hear these lectures.
At a private meeting Dr. Frank Stehr was able to briefly describe the NCL Foundation to Mrs. Köhler (wife of the German president), who serves as patron to ACHSE. ACHSE is an association of self-help groups in which patients and families of patients affected by one of 5,000 rare diseases are organised.
NCL information sheet
The HEXAL und ratiopharm companies could be persuaded to have their sales force personally present the NCL information sheet to paediatricians free of charge. This made it possible to reach a large number of paediatricians over a wide area.
It has also already been possible to place this sheet free of charge at a number of medical conventions, including ones in Fulda, Tubingen and Berlin.
Here you can find the German version of the NCL information sheet as a PDF (~194KB)
NEW
Since October 2011 we offer an English version of the NCL information sheet. Please, find the download here. (~888KB)
NCL publications
In fall 2007 a written medical NCL continuing education course initiated by the Foundation appeared in "Kinder- und Jugendarzt". The Foundation was able to obtain Prof. Kohlschütter as the author of the course.
Medical continuing education courses
The NCL Foundation successfully arranged to have Prof. Steinfeld as the instructor for an NCL continuing education course at the Children's Hospital in Magdeburg. Participating physicians received three continuing education points.
