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BDFA Spring Newsletter & Bulletin

Our latest editions of our Spring Newsletter and Bulletin are available to read or download. Download below Spring Newsletter Spring Bulletin BATcure Newsletter  

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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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Undiagnosed Children’s Day 2017

On Friday 28 April 2017 we will mark Undiagnosed Children's Day. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.…

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

Thank you for your support.