The BDFA work closely with the Roald Dahl Marvellous Children's Charity. They have launched an exciting programme entitled ‘Precious Moments. The programme is looking at health communications and is being delivered in partnership with Contact A Family. They are calling…
Nominations have opened for the 2015 Well Child Awards. These annual awards, supported by long term partner GSK, celebrates the inspirational qualities of the UK’s seriously ill children and young people along with the dedicated health professionals who go that…
BDFA are supporting this years Rare Disease Day on February 28th. www.rarediseaseday.org 2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the focus on the daily lives of patients, families and caregivers…
This leaflet was designed to answer some of your questions about what the equipment needs will be for a child or young person living with a diagnosis of an NCL disease. The BDFA Support and Advocacy Partner is available to…
This leaflet was designed to answer some of your questions about financial support available when you are caring for a child or young person living with a diagnosis of an NCL disease. The BDFA Support and Advocacy Partner is available…
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
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…