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04/07/2024 Dear Families, Following the Nice Committee meeting on 12th June for the re-evaluation of Brineura, we wanted to make you aware that NICE have decided to pause the formal evaluation process while they assess new evidence from BioMarin. NICE…

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We’re Supporting Newlife Charity’s New Report, Fight For Our Future

             As part of our work with Disabled Children's Partnership we are supporting Newlife the Charity for Disabled Children new report, 'Fight For Our Future', which reveals the bleak situation facing disabled children and their families.The report paints a bleak picture,…

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Help Support Short Lives Cant Wait By Signing The Letter To The Prime Minister

Together for Short Lives has launched their ‘Short Lives can’t wait’ campaign this evening and we are encouraging families in the Batten community to get involved. Seriously, ill children and their families are not getting the care they need, because…

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Invite Your MP To Child Trust Fund Westminster Hall Debate, Important Debate In Parliament Next Tuesday 19 March At 4.30pm

                 Update from Disabled Children’s PartnershipThe amazing parent campaigner Andrew Turner has secured a Westminster Hall debate on Child Trust Funds for disabled young people. This is happening next Tuesday 19th March at 4.30 pm.   The Westminster Hall debate will…

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International Epilepsy Day

It’s International Epilepsy Day - a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. While everyone’s epilepsy journey is unique, we take many steps in common…

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BDFA CLN2 Families Meeting, Thursday 21st Dec, 12pm- Re PR And Communications For Regenexbio News Last Month

   Dear Families,As per our communication on social media yesterday the BDFA would like to invite you to attend a short call on Thursday 21st December at 12pm.The purpose of the call is to update you on our PR and…

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Summary Of Beyond Batten Disease Foundation Quarterly Family Research Call- Phase III Batten-1 Clinical Trial, Updates On CLN3 Research

Dear Families, At 4pm CST (10pm GMT) on 15th November 2023, Beyond Batten Disease Foundation held their quarterly Family Research Call. This was led by Mary Beth Kiser (CEO), Dr Ineka Whiteman (Scientific Consultant) and Craig Benson (Chair of the…

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News From Neurogene

The BDFA has been asked to share some exciting news from Neurogene. If you would like to read more you can find more information at the link below the letter. Please do not hesitate to reach out to us if…

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BDFA Family Support Service – Update

Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…

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Dr Joanna Nightingale, Head Of Scientific Affairs Attended A Roundtable Meeting Hosted By MAP Patient Access Limited

On the evening on Wednesday 26th April, Dr Joanna Nightingale, Head of Scientific Affairs attended a roundtable meeting hosted by MAP Patient Access Limited on “Harnessing the potential of advanced therapy medicinal products (ATMPs) – the case for change” at…

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