Find all the latest news about Fanconi Anaemia and what Fanconi Hope have been up to below.
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The 2024 Fanconi Cancer Foundation (FCF) International FA Support Group Summit, held on Sep 19, at the same venue as the Scientific Symposium in Charlotte, N. Carolina, brought together patient support group representatives from 17 countries to discuss advancements, challenges, and initiatives in the field of FA. Key topics covered
Fanconi Hope was well represented at the 2024 Fanconi Cancer Foundation Scientific Symposium in Charlotte North Carolina, 26th – 29th September. Beth Lee, our Registry Liaison and Research Coordinator and Dr Riya Tharakan, a Clinical Research Fellow also working on the Registry, were invited to the event to present their poster on
In the past, producing newsletters and magazines alongside all the other important charity issues has been challenging but I am pleased to say that we now have significant additional support which should enable us to produce a magazine each year along with regular newsletters. Our first magazine is ready to
Ailish and her friends Patricia, Trisha, Anne-Marie, Carmel, Sandy and Sheamus ran the Dublin mini marathon and raised £3200 for Fanconi Hope. Ailish is no stranger to the long drive from Castlebar to Dublin, but this time she wasn’t on her way to a hospital, she’d decided to run the
We welcome two new faces into the charity, Suzanne Lloyd, as PA to the Chair, and Katie Carr, as Head of Communications. Suzanne Lloyd is Personal Assistant?to the Chair of Fanconi Hope, working diligently behind the scenes, ensuring all administrative tasks are up to date. As the primary point of
With the move of Bob Dalgleish, the Chair of Fanconi Hope to Scotland we were obliged to register with the Scottish Charity Regulator as well as with the Charities Commission for England and Wales. We are now successfully dual registered!
The Together for Healthy Marrow Alliance brings together six small but mighty charities that support people living with rare conditions that include bone marrow failure as a symptom. The conditions include Aplastic Anaemia, Dyskeratosis Congenita, Paroxysmal Nocturnal Haemaglobinuria, Shwachman Diamond Syndrome, Fanconi Anaemia and a range of Congenital Anaemias. As
A significant grant from private individuals is enabling Fanconi Hope to fund a pilot study in Manchester to characterise the oral microbiome of individuals with Fanconi Anaemia. The oral microbiome is a complex community of bacteria and other micro-organisms living in your mouth, playing a crucial role in digestion and
On May 24th 2024 the FA Europe Network held the first ever pan-European scientific meeting to promote collaboration on Fanconi Anaemia between European countries. This was the culmination of efforts initiated by Fanconi Hope and the Dutch FA Support Group (the Workgroup of the VKN) with the help of an
At the start of 2023, Fanconi Hope and our partners in the Together for Healthy Marrow Alliance concluded our National Community Survey into the experiences of those with rare conditions affecting the bone marrow. This presentation shares some of the main findings from the Rare Voices report. You can watch
With thanks to The National Lottery Community Fund, who have funded our Better Together for Healthy Marrow Alliance Project, we are pleased to be able to bring you access to a benefits advice and support service, to help you understand and navigate the benefit system, in relation to your medical
It was such a showing of love and togetherness… when things get hard, we know all those people are there for us.” Annabel Nicholls and 5 friends (“Team Ada”) raised over £5000 for Fanconi Hope wild swimming, running and walking long distance. Annabel had always been a keen swimmer, but with a 3 and a
Meet James Gray, Sales Operations Manager, Aerospace and Automotive lover, world-traveller “In many ways I’ve lived the dream life: work hard, play hard” says James (42) who has developed his international business career in the Aerospace and Automotive sectors in the UK and Dubai. “Living in Dubai gave me the opportunity to see the world”
Ailish and her friends Patricia, Trisha, Anne-Marie, Carmel, Sandy and Sheamus ran the Dublin mini marathon and raised £3200 for Fanconi Hope. Ailish is no stranger to the long drive from Castlebar to Dublin, but this time she wasn’t on her way to a hospital, she’d decided to run the Dublin Mini Marathon for Fanconi
Meet Louise Dalgleish, photographer, drag king, club night organiser, retail worker, enjoyer of life. “I do a lot” says Louise, underplaying the fact she currently has 6 jobs. These include part time positions in retail and hospitality which give her the independence to do the freelance work she really cares about: raising awareness around
