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Get Involved – Rare Disease Day 2016

Rare Disease Day takes place on the last day of February each year. This year its the 29th February 2016 The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases…

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Tim Martin Fundraising Lunch

On February 5th 2016, Tim Martin together with Ellen and Laura Bletsoe raised over £30,000 for BDFA during a Fundraising Lunch Event at the City of London Club. Tim Martin met Ellen at an event they both attended last year. …

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Eurodis Survey

EURORDIS is conducting an internet-based survey in an effort to better understand how well patients are engaged in medical care, including the relationship with health care providers, the understanding of the therapy (its efficacy, possible difficulties, benefits as they see…

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(HRH) The Countess Of Wessex – Shooting Star Chase Hospice

Her Royal Highness (HRH) The Countess of Wessex put her artistic skills to the test when she joined supported children and families for some cake decorating at Christopher’s on Tuesday 9 February, as part of our Guildford-based hospice’s 15th birthday celebrations.…

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BATCure Kick Off Meeting

The first meeting of the BATCure group took place at UCL in London on January 27-29. It was a very exciting to finally be starting on the project with over 30 scientists, research students and clinicians attending from Denmark, Germany,…

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BPSU – Rare Disease Conference 2016

Join Royal College of Pediatrics and Child Health for the BPSU's 30th anniversary Rare Diseases Conference, taking place on 23rd February 2016 at the University of Birmingham. The conference will bring together paediatricians, trainees and other healthcare workers with an…

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Aldemore – BDFA Charity Of The Year!

ALDERMORE ANNOUNCES THE BATTEN DISEASE FAMILY ASSOCIATION AS ITS CHARITY OF THE YEAR  Aldermore employees have chosen the Batten Disease Family Association (BDFA) as their charity of the year for 2016. The Bank’s employees aim to raise £15,000 for the…

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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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Run 10K For The BDFA

Is your New Year's resolution to get fit and have fun? And to raise money for the BDFA whilst doing it? Then sign up for the Vitality British London 10K, staged through the heart of central London passing many of…

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To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

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.