Find all the latest news about Fanconi Anaemia and what Fanconi Hope have been up to below.
To stay in the loop, sign up for emails:
“I wanted to do something to mark my 70th year” says Kevin Mansell, who turns 69 on the 10th of August, ‘so I decided to hike to the highest elevation (or County Tops) in each of the 70 counties and paddle 10 nautical miles, and to do this in 70
“I wanted to do something positive and fun for families and the local community as well as raising as much money as possible” Lou Allen says of the Family Fun Charity Day she is organising in Worcester on May 25th. “It started as something small and has just got bigger
We were recently asked if we could describe the progress in treatment of FA over the last 25 years, so we’ve put together a short summary based on the Fanconi Cancer Foundation’s Clinical Care Guidelines and reviewed by an expert FA haematologist/oncologist. In the past 25 years, Fanconi Anaemia treatment
We have just succeeded in securing a place for FA Europe in the European Haematology Association’s Patient Advocacy Committee. Jeannie Dalgleish from Fanconi Hope has volunteered to take on this important role on behalf of FA Europe and will be attending her first meeting of the group in April in
In May this year, we are holding our second annual scientific meeting, this time in Italy, focused on helping to standardise care guidelines, with a particular focus on the transition to adult care. Last year saw the first FA Europe scientific meeting in Paris where 92 clinicians, scientists and patient
We are delighted to announce the formation of a Europe-wide Virtual Tumour Advisory Board. This has been a key aspiration of our FA Europe Network for some time to provide a forum for clinicians anywhere in Europe to be able to seek advice on the treatment of head and neck
You might have noticed us talking a lot about FA Europe in our newsletters and may wonder how this relates to Fanconi Hope. As you know, there is a scarcity of both patients of experts in the UK and in any one country. One way we can multiply the impact
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
“I wanted to do something to mark my 70th year” says Kevin Mansell, who turns 69 on the 10th of August, ‘so I decided to
“I wanted to do something positive and fun for families and the local community as well as raising as much money as possible” Lou Allen
12-year-old Dexter “felt everything” as he set off from Woodley in Berkshire on his way to Paris by bike last August. His mission was to
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
