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 and depth of our research, and its clinical application is through working together across European borders.
As a result of Brexit, UK researchers and clinicians were shut out of many European Union activities at the same time as we at Fanconi Hope were growing our relationship with European FA support.
Starting in 2019 we discussed potential collaborations with other European Patient Support Groups. The result of this was that the Netherlands FA support group and Fanconi Hope submitting a joint proposal to Fanconi Cancer Foundation to form an FA European umbrella group that connected FA patients, clinicians and scientists across Europe.
Together we proposed the creation of the FA Europe Network focused on facilitating fundraising, sharing best practices and collaborating on research. The Fanconi Cancer Foundation awarded us a $10,000 grant to hold an inaugural in-person meeting of patient support group representatives and interested clinicians and researchers.
However, things didn’t go as planned, due to the pandemic. After a series of online meetings, where the FA community across Europe demonstrated their enthusiasm of to collaborate, we were finally able to meet in person in 2022.
Since the initial grant, the activities of the network have been funded largely by the patient support groups (often charities like ours) involved. Fanconi Hope for example, has contributed £10,000 per year over the last 3 years and will continue to do so at least at this level. This vital work is funded entirely through your fundraising efforts, so please help us continue this initiative to help improve the lives of those living with FA.
The benefits to our UK FA community and to the development of better treatments for FA are clear. Being a part of the FA Europe Network allows Fanconi Hope to play a much greater part in improving the lives of people with FA than we could ever do on our own.
We now have 10 patient support groups covering 13 European countries and representing more than 50% of the European population. Our emphasis is always on collaboration as will become evident from the two of our key initiatives: the European FA Virtual Tumour Advisory Board and the Annual Scientific Meeting, the second largest FA scientific Meeting in the world after the Fanconi Cancer Foundation Symposium.