General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Hart Chairman’s Volunteer Recognition Scheme 2016

On the night of 22nd March, two of the BDFA’s volunteers were nominated and presented with certificates of appreciation at the Hart Volunteer Recognition Event held at The Harlington in Fleet. Andrea West nominated Emilia Stefanescu, who is working as…

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4 Easter Themed Fundraising Ideas

Easter is a very exciting holiday, especially for children because it involves lots of chocolate and one of the fluffiest and loveliest animals: the bunny. This year Easter is celebrated on March 27, right at the beginning of Spring. With…

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Rare Barometer Voices Survey

Rare disease patients, family members and patient representatives across Europe can now register for Rare Barometer Voices, a new interactive survey panel available in 23 languages, which collects the experiences of people that are living with or affected by a…

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BioMarin – CLN2 Enzyme Replacement Trial

At the Annual World Symposium the worldwide Batten community received some positive news from the US company BioMarin about their data from the CLN2 (Late Infantile Batten disease) enzyme replacement trial. The trial has been ongoing in sites in London,…

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James & Family Visit 10 Downing Street

Monday evening James and his family were honoured to speak at an event at 10 Downing Street about the families experiences. James has Infantile Batten Disease, and together with Together for short lives, they attended 10 Downing Street and met with…

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Andrea Is Attending WORLDSymposium™ 2016

Andrea is very privileged to be attending Dr Tammy Kielian's talk on her pre-clinical work on gene therapy for CLN3 (Juvenile Batten Disease) and also BioMarin will present the data from the CLN2 trial for the first time. We will bring…

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Meet Beatrix The BDFA Easter Bunny

Meet Beatrix the BDFA Easter Bunny, the newest member of the Batten Disease Family Association team. She is a digital bunny, so you can only meet her online. Beatrix is friends with Boris_the_bear and together they are raising awareness for Batten disease.…

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Clinical Nurse Specialist

The BDFA funded Clinical Nurse Specialist Katie Hanson has left her post as Batten CNS at Great Ormond Street Children's Hospital. She can still be contacted, if needed by families, until a new Clinical Nurse Specialist for Batten disease is…

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