General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
BDFA Family Conference 2014

We are very pleased to invite you to attend the 2014 BDFA Family Networking Weekend and AGM which will be held on: Saturday 8th and Sunday 9th November 2014 from 10.30am – 4.00pm at RNIB Pears Centre, Wheelwright Lane, Ash Green,…

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Kidz Scotland

Kidz Scotland Thursday, 11th September 2014 - 9.30am - 4.30pm Royal Highland Exhibition Centre, Edinburgh, EH28 8NB Visitor's FREE entry tickets are available! Disabled Living (one of the North West's oldest disability charities) is delighted to bring the Kidz events…

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Beefy’s Charity Foundation

Batten disease is the most common inherited neurodegenerative disease of children and young adults in the UK.   It develops in a healthy child, and causes progressive deterioration and loss of vision as well as epilepsy and a gradual decline…

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BioMarin BMN190 Trial

BioMarin would like to announce that Great  Ormond Street Hospital (GOSH) in London will be joining the European clinical study centres participating in the BioMarin BMN190 trial in the immediate future.  At the time when GOSH initiates the study, the…

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Neurological Alliance

Batten Disease Family Association welcomes Neurological Alliance’s five calls to action for prioritising neurological services The Neurological Alliance has today launched a new report, Going the distance: National calls to action to drive neurological service improvement in England, taking a…

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Improving Rare Disease Education

Improving Rare Disease Education and Training for UK Nurses: hugely important initiative to ensure earlier diagnosis and better focussed care. The British government recently launched a first-of-its-kind national initiative, “UK Strategy for Rare Diseases,” to promote earlier diagnosis and treatment…

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Stamp Collections

As you are aware, we are now collecting used stamps which we can turn into funds for the BDFA. There has been a change to the address to send them to, the new address is as follows. Fundraising Stamps Ltd,…

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BioMarin CLN2 (Late Infantile Trial) – Evelina London Children’s Hospital

The Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, London has begun recruiting subjects with late infantile CLN2 disease, a form of Batten disease, for a clinical trial.  The trial will examine whether BMN190, an experimental drug,…

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Autumn Newsletter & Bulletin

Our new newsletter and Batten Bulletin is  available for you to download.  Read about our work and our future plans.  Please pass on to friends, families or colleagues and help us raise awareness of Batten Disease. Autumn Newsletter 2013 Batten…

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The BDFA Welcome A New Member To Our Advisory Team

The BDFA are delighted to welcome Professor Paul Gissen to our team of Medical and Scientific Advisors. Professor Gissen is a Consultant in Inherited Metabolic Diseases (IMDs) at Great Ormond Street Hospital for Children, London, UK and a Wellcome Trust Senior Research…

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Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.