Back to "Education" - MedicalProfessionals

Ophthalmologists

The first sign of the illness is a deterioration in eyesight. In this case, eye specialists are the first point of contact for families met with this illness. In order to avoid the wrong diagnosis, the NCL Foundation is there to provide training within clinics, as well as publications, and the spreading of information by differential diagnostics posters.

Since it originated, the NCL Foundation has held discussions with about 1000 eye specialists, held talks in Germany, Austria and Switzerland, published academic reports with up to 6500 editions and given out 8000 leaflets.

We work closely with orthoptists and sight schools. If you are interested in training and/or the poster, please get in contact with us.

 

 








Picture of a fundus of a NCL patient with considerably structured macula

(Source: Prof. K. Rüther)

Trainings / Talks

Dr. Frank Stehr has already held talks at many eye clinics in Germany, Austria and Switzerland. He has lectured many eye specialists on the juvenile illness NCL, its symptoms and causes, and provided an introduction on the work of the NCL Foundation. Through this work, which provides direct information on the illness, the rate of false diagnosis has decreased.

 

Diffrerntial diagnostic poster

A poster project, which focused on the differential-diagnostics, was organised with the co-operation of Pro Retina Deutschland e.V. (Pro Retina Germany)

It details the differential-diagnosis of Retinitis pigmentosa, which NCL also belongs to. The differential-diagnosis poster now hangs on the walls in the eye departments of over 25 different clinics across all of Germany and Austria.

 

Here you can download the NCL differential diagnosis poster as PDF. Upon request we will gladly send one or more copies to your clinic.

 

NCL-Leaflet

 In 2008, the NCL Foundation published a leaflet, “The NCL Information Leaflet”, especially designed for the particular needs of eye specialists. Since then, the leaflet has been distributed at conferences and other events.

 

NCL in specialised media

Furthermore the NCL Foundation has tried to get articles into relevant specialist publications. For example, the organisation composed the scientific publication, “Relevant opthalomological diagnoses for the care of patients with juvenile Neural CeroidLipofuscinosis” (by Prof. K. Rüther et al; 2006, published in the clinical monthly of eye medical science), which was sent to all German eye clinics. The directors were asked to consider using the publication within internal education programmes.

The theme of NCL was featured successfully in the specialist magazine, “Opthalmology”, which dedicates itself to all aspects of eye medical science. The goal of each edition is to give an all-encompassing view of a particular theme. In July 2010, NCL was the chosen theme. Several doctors composed entries for this, providing an insight into NCL from different viewpoints:

 

·       Differential-diagnosis (Dr. Krohne and colleagues)

·       Genetics (Dr. Preising and Prof. Lorenz)

·       The role of neuropaediatricians

·       NCL-Animal Models (Prof. Rüther)

·       Editorial (Dr. Frank Stehr)

 

 

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.