Batten disease Resource

NCL Resource - A gateway for Batten disease

This site serves as a global gateway for clinicians, families, researchers and those offering professional support, who have an interest in or are affected by Batten disease or who wish to find out more.

Information can be accessed via four main routes - Clinicians, Families, Researchers, Professional Support. The Clinical route describes Batten disease and includes details on diagnosis and diagnostic services. The Family route also describes Batten disease and lists support groups. The Research route includes the NCL Mutation Database, established in 1998, and other useful information. The Professional Support route includes details of coordinated initiatives to support those affected by Batten disease.

A fifth route, Research Consortia, serves to meet research needs and currently act as a focus for collaborative efforts to identify the remaining human and animal NCL genes and facilitate functional approaches. An additional route, Creativity, has been launched to display creative items from families with Batten disease, and to celebrate life, in both its fullness and fragility.

Recent News:

NCL Mutation Database updated and cross-referenced to new Patient Database of reported cases

CLN13 or CTSF paper causing adult Type B NCL now in press and mutations in the database

13th International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease) and Parent Organization Meeting, Royal Holloway College, London, UK, 28-31 March 2012 NCL2012

New Edition Batten disease Book now available to order.

New nomenclature for the NCLs

By July 2012, this site has received over 15,000 visits from 121 countries. Nearly half the visits originate from the UK or the USA. One user reported in Nov 2009 " After scouring the internet for the past few weeks and sifting through scientific journals, personal testimonies, and clinical studies, I continue to return to your NCL website. At least for me, it is by far the most accessible, user-friendly, and informative site for the layperson that I have found and subsequently used. Thank you for providing this resource--to the global community, indeed.", and another more briefly in 2012 "I thought your Batten webpage was fantastic".

A complementary site in languages other than English can be found at NCL-Netzes.

click here to read Belorussian translation of this page.

This site design was by Marzena Markowska, with further support from UCL.

Financial support is acknowledged from the Batten Disease Support and Research Association USA, and the Batten Disease Family Association UK.

NCL RESOURCE - A GATEWAY FOR BATTEN DISEASE

NCL Resource - A gateway for Batten disease