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BDFA MEDICAL WEBINAR,  Wednesday 22nd April- 11am

BDFA MEDICAL WEBINAR Wednesday 22nd April- 11am We are holding our first BDFA Medical Webinar next Wednesday at 11am. We welcome our guests for this event Professor Paul Gissen and clinical nurse specialists Laura Lee and Becky Bower. They will be discussing…

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One Of Our Parents, Amanda Harrison, Writes About Her Experience Of Lockdown During Coronavirus

One of our parents, Amanda Harrison, writes about her experience of lockdown during Coronavirus. Her feelings of isolation will resonate with many. Likewise, issues accessing shopping slots and the loss of key support such as the family's local hospice. Thank…

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Urgent Family Grant Scheme To Support Families Caring For A Family Member With Batten Disease With The Challenges Faced Due To Covid-19

** Some brighter news ** The board of the BDFA is pleased to announce an urgent family grant scheme to support families caring for a family member with Batten disease with the challenges faced due to Covid-19.   We have…

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The LSD Collaborative And Partners Webinar About Covid-19

The LSD collaborative and partners have organised a Webinar about Covid-19 and all families are invited to attend. Monday 23rd March, 11-12pm Questions need to be submitted in advance. We understand it's an incredibly stressful time for you all. Please…

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NICE Decision

NICE Decision - 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is a dreadful blow to all those with children on treatment,…

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We Are Pleased To Announce That We Are Now A Proud Member Of The Disabled Children’s Partnership

We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their families in England. We know that…

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Notice Of Annual General Meeting Of The Batten Disease Family Association

The 2018 AGM of the Batten Disease Family Association is taking place on 24 Nov at 1.30pm at Resource for London. During the meeting the election of the Chair of Trustees and are-election of a trustee will take place as…

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NICE HST Update

We are pleased to say that a further meeting of the NICE Highly Specialised Technology (HST) Committee was held in Manchester yesterday about the Brineura treatment for CLN2. The meeting was attended by two patient experts who are both mothers…

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Petition Delivered To Number 10 Downing Street

Thank you! Over 295,500 people signed the petition calling on NICE to approve the treatment for CLN2 and NHS England to fund the treatment. This is an amazing achievement so thank you to everyone who signed and promoted the petition.…

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Registration For NCL 2018 Is NOW OPEN!

Registration for NCL 2018 is now open on the conference website: http://www.ncllondon2018.com Please contact conference organisers Bioscientifica who can provide details of discounted rates for families: ncl2018@bioscientifica.com

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