General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Starlight Ball 2017

We are delighted to announce we will be holding a BDFA Starlight Ball on awareness day – Friday 9th June Join us for Dinner, Drinks and Tunes! All proceeds go to The BDFA Single tickets £75 or a table of 10…

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Rare Disease Day 2017 – Get Involved

Rare Disease Day takes place on the last day of February each year. This year its the 28th February 2017 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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Family Conference 2017 – Save The Date

The BDFA conference will be held from 24th-26th November 2017 at the Crowne Plaza Hotel in Stratford Upon Avon. More details to follow soon. Look forward to seeing you there.

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Family Conference 2016

After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!

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Ben Nevis Climb Complete!

Well done to our intrepid team of Ben Nevis conquerors! Apparently it was a lot more difficult than anticipated, so why not support them by donating to the BDFA HERE

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Awareness Day – 3rd June 2016

On the 3rd June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into…

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Batting For Batten Lunch 2016

We are very excited to announce our Charity lunch in the Long room at Lord's: Batting for Batten. The lunch starts at Midday until 4PM, on Wednesday 6th July 2016. Our Patron Sir Andrew Strauss will be in attendance along with other world…

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Family Conference 2016 Information

We are pleased to invite you to the 2016 BDFA Family Conference which will be held on: Friday 18th - Sunday 20th November 2016 from 9.30am – 4.00pm at the Holiday Inn Bridgefoot Quay, Warwick Road, Stratford-upon-Avon CV37 6YR There…

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Hart Chairman’s Volunteer Recognition Scheme 2016

On the night of 22nd March, two of the BDFA’s volunteers were nominated and presented with certificates of appreciation at the Hart Volunteer Recognition Event held at The Harlington in Fleet. Andrea West nominated Emilia Stefanescu, who is working as…

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Meet Beatrix The BDFA Easter Bunny

Meet Beatrix the BDFA Easter Bunny, the newest member of the Batten Disease Family Association team. She is a digital bunny, so you can only meet her online. Beatrix is friends with Boris_the_bear and together they are raising awareness for Batten disease.…

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

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

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.