With targeted awareness work, the NCL Foundation offers the 700 children affected by NCL in Germany (and around 50,000 worldwide) a platform to make others aware of this incurable disease.

The relative obscurity of NCL leads to regular misdiagnoses. For the affected children and their families, this means a succession of strength and nerve sapping doctors’ visits. On average it lasts 2-4 years until NCL is correctly diagnosed. Therefore a targeted Diagnostic is one of the primary aims in order to reduce the stress on the families.

In order to enable early detection of the disease, the NCL foundation directs its training towards relevant groups of doctorssuch as ophthalmologists and paediatricians. It also organises series of lectures at existing medical congress and for students. The foundation also works together with schools in various projects both in and out of lessons.


But why is early diagnosis so important?

When the disease could be diagnosed earlier and faster, the parents and children would avoid the tiring process of ‘doctor hopping’ and therefore be spared great strain. Palliative measures(like enough sport) could then be begun earlier. It could also avoid wrong medicines being administered because anti-epileptic measures can produce severe side effects in NCL patients. Furthermore, with the knowledge that they are carriers of the NCL mutation, the parents can then receive genetic advice and consider family planning with all the information they need.

Read how NCL can be diagnosed here.

Contact Person

Tiziana Serio

Phone: +49 (0) 40-69 666 74-28

Mobile:    +49 (0) 177-246 37 58


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.