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Medical Professionals

On this page we briefly introduce the various groups of doctors who come into contact with NCL. More detailed information and training sessions for ophthalmologists, paediatricians and paediatric neurologists can be found in the corresponding points in navigation or under the following points

Ophthalmologists | Paediatricians and paediatric neurologists

 

Opthalmologists

The first symptom of juvenile NCL usually comes in the form of sight problems. Therefore ophthalmologists are often the first medical contact point for suspected cases of the disease. They are therefore important partners of the NCL Foundation in avoiding misdiagnoses such as Retinitis Pigmentosa. The focus lies on the initiation of clinic internal training and the publication and distribution of differential diagnosis posters.

 

Paediatricians

Neuronal Ceroid Lipofuscinosis is the most common neurodegenerative childhood disease. Paediatricians and also often paediatric neurologists treat young patients and work closely with the parents to inform them about this fatal childhood dementia and accompany them through the progression of the disease.

In order to inform paediatricians about juvenile NCL, a series of lectures, publications and training will be implemented and information collected together with NCL experts will be distributed.

 

Paediatric Neurologists

The branch of paediatrics ‘paediatric neurology’ is particularly concerned with disease such as NCL. As the most common neurodegenerative disease among children it is relatively well known in this field. Therefore a focus of the educational work of the NCL Foundation is medical training for paediatric neurologists.

 

Neurologists

Many juvenile NCL patients now reach adulthood, due, among other things to an improved artificial diet. As paediatricians are then not allowed to treat them, neurologists are then confronted with a new disease. Therefore the NCL Foundation aims to specifically inform this group of doctors about the disease.

 

Human Geneticists

Human genetic laboratories are concerned with the diagnosis of Neuronal Ceroid Lipofuscinosis. Furthermore human geneticists offer vital advice to the affected parents. They are therefore significant co-operation partners for the NCL Foundation to remain professionally informed about the hereditary disease. Neurogeneticists deal with the specialised field of hereditary diseases which have a neurological component – of which NCL is one.

 

Psychologists

The immense psychological damage suffered by both the children and their parents requires multi-faceted professional support. The personality change in young NCL patients who are conscious of the degeneration of their body is particularly indicative of the important role of psychologists in the fight against the disease.

Contact Person

Tiziana Serio


Phone: +49 (0) 40-69 666 74-28

Mobile:    +49 (0) 177-246 37 58

Mail:   tiziana.serio@ncl-stiftung.de

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.