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BDSRA Online Conference July 10th – 12th 2020

BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…

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ONE WEEK TO GO Untill International Batten Disease Awareness Day 2020!

ONE WEEK TO GO until International Batten Disease Awareness Day! What you can do to raiseawarenes and be orange on the day? Use #battendiseaseuk #battenday2020 on your social media posts Dress in orange, but not just you, the dog, the…

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BDFA Financial And Organisation Update May 2020

BDFA Financial and Organisation Update May 2020   We held a zoom meeting earlier this month to discuss the BDFA’s accounts (year-end August 2019) and we were joined by 11 parents as well as professionals working in the Batten arena.…

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Reminder Of Virtual Family Meeting Tomorrow- Friday 1st May, And Welcome Richard

A Quick Reminder, it is not too late to sign up!   Just a reminder that we have our ‘pre-AGM’ family meeting tomorrow at 2pm on Zoom about the BDFA’s accounts (year end 2019) and our current position and future…

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*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME

*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME Wednesday 22nd April- NEW TIME 4PM Dear All,   Just to confirm our BDFA medical webinar tomorrow. Please note the change in time of 4pm.   Unfortunately Professor Gissen has had…

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

 

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