General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Showing Our Support For Mothers In The Toughest Of Times

As it is nearly Mother’s Day, we would like to show our support for mothers in the toughest of times. Please help us by sharing a photo of you and your children. You can save the image below and add…

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Harriet Is Running The London Marathon

Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also volunteers with families living with disability in Uganda. Now she…

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Education Training Days

Have a look at the Education Page on our website for more information on the up and coming Education days. Join us and staff from New College Worcester, The Royal Blind School and Linden Lodge in their respective training days to…

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Laboratory Open Day At Manchester Metropolitan University (MMU)

Professor Tristan McKay and the BDFA would like to invite parents and carers to a Laboratory Open Day on Thursday 30th March 2017 at MMU. The day will run from 10.30am-3.30pm with a light lunch provided.  BATCure is a 3-year research project with…

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Opportunity To Share Your Story As Part Of The Bears4Rare Campaign

Bears4Rare is an initiative from Shire which aims to bring public attention to the difficulty rare disease patients face accessing treatments.  Bears4Rare aims to unite the patient voice to highlight the universal challenges faced by people in the UK living…

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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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New College Worcester Professionals & Parents Day

New College Worcester Professionals & Parents Day Dissemination of the European Education Project of Juvenile Batten Disease Join staff from Batten Disease Family Association (BDFA) and New College Worcester to find out more about an Erasmus+ project to improve educational…

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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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Abeona Trial – Batten Contact Registry

For all of our families with children and young people with CLN3 (Juvenile Batten disease), we are in regular contact with Abeona Therapeutics and have asked for clarification on whether families from outside of the US can access their forthcoming…

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Make a donation:

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.