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Registered charity no: 1098918
 

www.nathansbattle.com – The Nathan’s Battle Foundation is an American organisation established to aid in the development of therapies for Late Infantile Battens Disease. The foundation utilises entrepreneurial spirit and techniques to seek out and develop promising therapeutic approaches by fostering collaborations between basic research and therapy development mechanisms.

www.bdfa-uk.org.uk – A UK organisation that provides support, information and networking opportunities for the families, carers and professionals giving care to children and adults with Battens disease (previously www.bdfauk.freeserve.co.uk).

www.bdsra.org – An American website created to give international support to families of children and young adults with an inherited neurological degenerative disorder known as Battens Disease.

www.climb.org.uk – Lists metabolic-related diseases that may be helped through research into Battens disease.

www.ldnz.org.nz – Organised to improve contacts, information sharing and support among affected people and their families, within New Zealand and internationally; to advocate for accelerated research into the causes and treatment of Lysosomal Storage Diseases, and for improvements to the treatment and care of affected people.

www.neuroscience.iop.kcl.ac.uk/psdl – The Paediatric Storage Disorder laboratory (PSDL), lead by Dr. Jonathan Cooper, is studying the biology of a group of fatal genetically inherited diseases that affect children. In each of these diseases the ‘waste disposal units’, or lysosomes, that are present in every cell no longer function properly. This results in the abnormal build up of storage material as part of the disease process in these ‘Lysosomal Storage Disorders’ (LSDs). Although there are more than 40 such diseases, the PSDL team is focusing its efforts upon Batten disease (previously www.psdl.co.uk)

www.curebatten.com – This appeal aims to raise awareness of Variant Late Infantile Battens and £14,000 each year to fund a PHD Graduate to assist with research into Variant Late Infantile Battens.

www.blakespurpose.org – The Blake’s Purpose foundation was established in honour of Blake Dell’Aringa to help support and promote research into finding a viable cure or treatment for Batten Disease.