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Starlight Ball 2017 – Thank You

On a beautiful June evening we were lucky enough to host our very first Starlight Ball.  It happened to be held on awareness day.  We were thrilled to see so many people support the BDFA and also have a fantastic time…

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Awareness Day 2017 – 9th June

On the 9th 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 potential…

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Family Conference 2017 Information

These are the Conference documents that have been sent to those attending. If you require them again please see below. Conference Outline Kids Conference Outline Confirmation Letter   There is now LIMITED Booking available for BDFA Family Conference 2017 -…

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Laboratory Open Day At Manchester Metropolitan University

Laboratory Open Day at Manchester Metropolitan University hosted by Professor Tristan McKay and the BDFA: Thursday 30th March 2017   The BDFA would like to thank Professor Tristan McKay and his group at Manchester Metropolitan University (MMU) for hosting a very…

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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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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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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.