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Many families affected by the various forms of Neuronal Ceroid Lipofuscinoses (NCL), commonly referred to as Batten disease, will be faced with numerous important decisions about education for their child. The Batten Disease Family Association (BDFA) aims to help them get the best possible provision, as well as advising and supporting those professionals working with them.

We are able to provide unique support through our BDFA Education Advisor (a qualified teacher of the visually impaired who has worked with many children and young people diagnosed with the various forms of NCL).

This leaflet offers information about support available for individuals who have Special Educational Needs (SEN) due to a diagnosis of NCL, as well as providing general advice for families who wish to ensure their child receives the best educational experience possible. We recommend families share this document with all the professionals from education, health, social and other services working with them.

Download Here

BDFA Education Leaflet - We are able to provide unique support through our BDFA Education Advisor

Download Here

Visual Impairment Leaflet - Parents and carers can get advice and support regarding visual impairment

Resources for children and young adults with CLN3 Batten disease

Funded by Erasmus+, Juvenile Neuronal Ceroid Liipofuscinosis (JNCL) and Education is the first book to explore education and CLN3 in children and young adults. Written by experts from across Europe, the book explores adapted and special needs education strategies that may contribute significantly to improved learning conditions, better maintenance of skills, and less frustration for individuals with JNCL, both evidence based strategies and strategies that are still in an experimental stage. The book mainly focuses on the school years but some of the chapters discuss transition to adulthood and a more varied adaptation of the physical and social environment.
There are 34 chapters in total on a wide range of topics including:
  • Perspectives on education and training
  • Planning education, assessment and intervention for students with JNCL
  • Staff competencies and staff guidance
  • Communication and language in education
  • Music education and music in education
  • The social life of children and adolescents with JNCL
  • Learning for Life
  • Parent needs and supports
  • Being a brother or sister of a child with JNCL.
Copies of the book can be ordered from the BDFA shop SHOP while stocks last.

Together for Short Lives’ interactive guide aims to help families of children and young people in England with life-limiting conditions join-up their assessments, plans and services across education, health and social care. Free to download and use, it helps families to understand their rights and make the most of the new special educational needs and disability (SEND) system, which is being implemented by government, the NHS, local councils, education providers and others. It has been funded by the Department for Education and written by Anna Gill OBE, a parent carer of a young person with a life-limiting condition, on behalf of the Council for Disabled Children (CDC).

Download the Guide here

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