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UCL School Of Pharmacy Study

UCL School of Pharmacy is carrying out a study to investigate the views of parents and carers about administering medicines to children via the rectal route. The survey will ask some demographic and background information before presenting three scenarios, where…

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Sophia Awarded Her PhD Today

Congratulations to Sophia who has been awarded the degree of PhD today. This a fantastic achievement and one we can all take great pride in as all your efforts funded her studies.  This is an important career step for Sophia and rewards…

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Possibility Of A One-and-done Treatment For This Form Of Batten Disease

Breaking news for Batten Disease "Our study opens up the possibility of a one-and-done treatment for this form of Batten disease," said Beverly Davidson, Ph.D., director of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics at Children's Hospital…

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Video – Family Networking Weekend 2015

This October our Family Conference was held at the Village Hotel in Coventry. Families, staff and professionals started arriving on the Friday, meeting up with old friends and making new ones. The AGM on Saturday morning, included a keynote speech…

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Science Is Again Threatened With Cuts: Help Us Tell The Government That Science Is Vital

Threats to science funding is a threat to us all, please visit and send an e-postcard to the Chancellor about why science and research is vital for Batten disease. The government is once again threatening research with cuts of 25%…

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ITV This Morning – The Harrison Family

The lovely Harrison family whose son James has CLN1 (Infantile Batten disease) will be raising awareness on This Morning on Monday 5th October. Please watch and let people know, a great platform to raise awareness.  

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Appeal To Build First Rare Diseases Centre For Children

Birmingham Children's Hospital is launching a £3.65 million appeal to raise money to build the UK's first rare diseases centre for children.   Read more here

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Dr Claire Russell’s Lab At Royal Veterinary College, London

Invitation to Dr Claire Russell’s Lab at Royal Veterinary College, London Friday 25th September 2015 11am-4pm Royal College Street London NW1 0TU

Recreating NCL (Batten disease) in animals allows us to understand what processes go wrong in the disease and enables the testing of new therapeutic approaches. In particular, zebrafish have unique features which make them easy to study and manipulate to help us to better understand these diseases.

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BATCure Research Consortium News

The BDFA is delighted to announce that the BATCure Research Consortium headed up by Dr Sara Mole at University College London has been awarded an EU Horizon2020 Innovation Grant of 6 million Euros to investigate potential therapies for CLN3, CLN6…

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Cycle To The Circle – Read About The Journey!

The Cycle to the Circle team have made it! You can read about the amazing journey and why they have done it here - Words form the team on completion - Worth it for 'the cause'. A big thank you to BDFA,…

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