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.
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…
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…
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
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…
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…
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…
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…
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…
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…
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