General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Mediaplanet’s Rare Disease Campaign

Happy to support Mediaplanet’s Rare Diseases campaign. The campaign is distributed through The Independent newspaper on 29th February, distributed at world leading events and is published online on Health Awareness. Learn more here: http://www.healthawareness.co.uk/rare-diseases  

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EU Horizon 2020 Award To RVC

BATCure, a consortium of leading scientific research groups and companies, in which The Royal Veterinary College is a key partner, has been awarded an EU Horizon 2020 grant of approximately 6 million Euros. BATCure aims to investigate the natural history…

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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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Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease