General: 07354 486586   |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Interim CEO Announcement

We are pleased to announce that the Trustees of the BDFA have invited Liz Brownnutt to step up to the role of Interim CEO until the end of February 2024 and she is delighted to accept.  We believe that Liz…

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Message From The CEO

I have taken the difficult decision to step down from my role as CEO at the BDFA. I wanted to take the opportunity to thank the dedicated staff team and all of the incredible professionals, organisational partners, colleagues and trustees…

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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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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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Welcome To Sarah, BDFA New Fundraising Assistant

We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…

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Welcome To Dr Joanne Nightingale As Scientific Officer To The BDFA

We hope you will join us in wishing a warm welcome to Dr Joanne Nightingale as our new BDFA Scientific Officer. Jo has with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research…

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Staff News- Mimi Petty, Our New Peer Befriending Coordinator

BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to…

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The BDFA Welcomes Sarah Kenrick To The Team As Our Batten Behaviour, Adults And Transitions Specialist.

Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long…

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BDFA STAFF NEWS, A Warm Welcome To Elizabeth Jones

BDFA STAFF NEWS A big welcome to Liz Jones to the BDFA family support team! Liz is a qualified Child & Family practitioner working with families for over 16 years in both voluntary and public sector. Liz has spent most…

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Join Our Team! The BDFA Are Looking For A Scientific Officer

Fancy working for the BDFA? The BDFA currently have an exciting job opening for a Scientific Officer to join the team. This is an opportunity for to join a national rare disease charity as our in house scientific ‘expert’ on…

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