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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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Joint Statement To The Global Batten Disease Community Regarding Update On Lexeo’s CLN2 Disease Gene Therapy Program

Dear Batten community, Over the past few years, Lexeo Therapeutics has been involved in developing an AAV-mediated gene therapy program for treating CLN2 Batten disease. However, additional funding and resources are required for further studies, and Lexeo is now looking…

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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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Next Quarterly Town Hall Meeting

Dear Families,The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 7pm on Wednesday 13th March.The purpose of the meeting is to provide families with an update from the team and to…

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