The non-profit NCL Foundation aims to develop with private funding a therapy for the fatal childhood disease neuronal ceroid lipofuscinosis (abbreviated NCL). Affecting approx. 450 children in Germany and 50,000 worldwide, NCL is one of the so-called rare or neglected diseases also referred to as "orphan diseases".
Because it is rare, NCL is often misdiagnosed. Families have to go on an odyssey through doctors' offices before the right and currently fatal diagnosis is made.
To facilitate early diagnosis, the NCL Foundation organises medical continuing education courses for relevant physicians' groups such as ophthalmologists and paediatricians. It also sets up lecture series for established medical conferences.
The ongoing school project "Biology Up-to-Date" conducted by the Foundation as part of genetics classes creates awareness of rare diseases among high school students and teachers.
School children in the sixth form, as well as teachers, are sensitised to rare diseases by the regularly performed school project "Learning partners for the A-level specialisation", which consist of six modules within the genetics class. Teaching is to be structured realistically and thus the pupils can view a gene analysis path in the laboratory of Dr. Fenner & Colleagues and even perform a PCR themselves in the Natural Science Technical Centre (NWZ).