26/10/2026
💜Fanconi Hope's investment in Europe is paying dividends💜
When Fanconi Hope helped to found FA Europe in 2019, the aim was simple to say but hard to achieve: no family affected by Fanconi Anaemia, and no clinician treating them, should ever have to face this disease alone. FA is so rare that a head and neck surgeon may see only one patient with it in a whole career. Yet adults with FA have a risk of head and neck cancer hundreds of times higher than the general population, and they often can't tolerate standard chemotherapy and radiotherapy.
Every year since, part of Fanconi Hope's income has gone into building FA Europe, because we believed that Europe's scattered expertise could be brought together to help every patient. The FA Europe Virtual Tumour Advisory Board is that belief made real. Since its first meeting in January 2025, it has grown to 75 clinicians and researchers, including 19 professors, from 13 countries. They give their time voluntarily to review difficult cases and offer joint, expert advice. In its first 18 months the board discussed more than 25 patient cases, and when a case was urgent an extra meeting was called at short notice.
For Fanconi Hope, this is where the investment is now paying dividends. Several UK patients have had their cases discussed by the board. Their own doctors received advice from Europe's leading FA cancer specialists, and their treatment decisions were informed by the combined experience of specialists who see more of these cancers than anyone else. Patients and doctors that might once have felt isolated now have a whole community of experts behind them.
The principals behind our European Virtual Tumour Advisory Board now meet every quarter with the US Virtual Tumor Board, and next year should see papers published by both parties on the impact of the Boards on their respective patient communities. In addition to this, from both tumour boards, we'll be contributing to an update to the cancer section of the Fanconi Cancer Foundation's clinical care guidelines, the worldwide authoritative handbook for FA care.
What began as a small charity's commitment to European collaboration has become a lifeline for patients across Europe and beyond. Every donation to Fanconi Hope is part of that story. You can find out more at www.faeurope.org/favtab.
