NCL is a worldwide problem, which needs an international solution. For that very reason, in 2011, the BDIA (Batten Disease International Alliance) –an international alliance of non-profit NCL organisations - was founded. More information on the Batten Disease Foundation can be found here.
NCL is a worldwide problem, countries where NCL cases are described (blue), however it is suspected to be found in more countries, NCL Research Locations (red) and non-profit NCL organisations (yellow)
This interactive map gives an overview of research lababoratories funded by the NCL Foundation (red stars) and other research laboratories (yellow spots) doing research on juvenile NCL disease. Please click on the symbol in the upper right corner to enlarge and open in a new window (full screen).
The organisation also takes responsibility for consultations with researchers interested in NCL and the sharing of third-party funds, which are awarded by companies and other foundations. At the moment, start-up funds can only be provided from NCL in exceptional cases.
The main focus of the foundation’s work is that of tying research and education together. Not only does the NCL Foundation successfully bring medical professionals and scientists from different disciplines together to use their knowledge for the good of NCL and to avoid “double” research, it also initiates its own clear NCL research projects, e.g. through the funding of scholarships or the placement of experienced partners for new partnerships and co-operative activities. In 2009, the foundation gave away the first NCL Research Award, to the amount of €50,000. The fifth and sixth research prizes have awarded up to €100,000. The money flows directly into national and international research and post-doctorate funding. The prize honours innovative, new ideas in NCL research.
Besides this, the NCL Foundation organises the annual NCL Congress and actively researches the biochemical and physiological principles of pathogenesis. This is influential in developing therapies. Through these platforms, there has been much achieved in recent years.
Results in the field of NCL research: from the initial description, to the discovery of the NCL gene, the setting up of the foundation and the vision of therapy in the near future.