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…
The BDFA are very proud to be part of this initiative to raise the profile of rare disease with the medical student and education community. Please share with anyone you think may be interested. This meeting aims to encourage medical…
We are very privileged to work with the dedicated and outstanding team from Seeability at Heather House who support young people living with a CLN3 diagnosis. Delighted that their work has been recognised: STAFF at the Tadley branch of charity…
We will be closed over christmas from 22nd December - January 5th 2015 Have a wonderful Christmas and New Year.
A description of the groundbreaking work of Dr Sara Mole and her team at UCL. Work that we have had the opportunity to support through funding. Research at UCL into the genetics of Batten Disease has had a global impact…
A powerful animation created for Together for Short Lives by video marketing agency Hurricane Media is released today. The short film, We’re having a baby was produced pro bono for the UK children’s palliative care charity, using real life stories…