General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Genetic Alliance UK – GenomeSeqWeek

Genetic alliance UK would like to invite you to join us for our week of events exploring how genome sequencing could impact your future. For details of the events and how to book tickets, please visit their website.  

Read More
Horizon 2020 Societal Challenge

Good news for the next step in European Research funding for Batten disease. The proposal submitted by Dr Sara Mole, UCL London, has successfully passed the first round in the European Commission funded project Horizon 2020 Societal Challenge “Health, Demographic…

Read More
Our New Office

Please note we now have a new BDFA Office. Our address is The Old Library 4 Boundary Road Farnborough Hants GU14 6SF Our phone numbers and email addresses remain the same. If you are in the area and would like…

Read More

The SENDirect website launched this week. Just type in your postcode and it will give you a list of services available in your area. You can search for free services and services for a specific age. Visit the website here

Read More
British 10K London Race 2015

NEW YEAR NEW START! Feeling a little jaded after the excess of Christmas? Looking for some inspiration to make a difference to Batten Disease? Wanting to set yourself a New Year challenge? Why not sign up for the British 10K London Race and…

Read More
Challenging Cuts To Short Break Services

Every Disabled Child Matters have produced a paper Challenging Cuts to Short Breaks Services. The resources intends to promote awareness of the duty for Local Authority's to provide short breaks for disabled children on their families and gives you an…

Read More
The Amber Trust – Music Is Not Just  A Pastime, It’s A Lifeline

We know that many children and young people living with a diagnosis of an NCL love music so we are delighted to be working closely with our friends at the Amber Trust who aim to enable children and young people…

Read More
The Invisible Patients

The Invisible Patients: New report reveals the alarming state of neurology services The Neurological Alliance has announced the launch of its new report, The Invisible Patients: Revealing the state of neurology services. Bringing together the findings of the Neurological Alliance’s…

Read More
BioMarin (BMRN)

BioMarin (BMRN) Says early data from Phase 1/2 BMN190 Study Shows Stabilisation of Disease. We are all very encouraged by the work of our partners in the scientific and pharmaceutical communities and hugely grateful to the courage of those parents and…

Read More
Step By Step Guide To Claiming Disability Living Allowance For Your Child

Cerebra have created a step by step guide to claiming Disability Living Allowance for your child. A fantastic step by step guide to claiming Disability Living Allowance for your child, which has been designed to make completing the form as…

Read More
  • 1
  • 2

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.