Connecting Fanconi Anemia Patients and Professionals across Europe

FA Europe is an initiative of Fanconi Hope in the UK and the Fanconi Anemie Werkgroep of the VOKK Nederland, supported by the US-based Fanconi Anemia Research Fund.

FA Europe is an umbrella organisation connecting patient support groups, clinicians, scientists and FA patient representatives from across Europe, whose collective voice, reach and influence should be greater than that of the individual organisations. We want all European countries to have the opportunity to be involved in the management and running of the organisation.

Our Vision: Equal access to optimised care for people across Europe affected by Fanconi Anemia.

The start-up meeting for FA Europe was held online  on 4th September 2020, with representation from 9 European countries: Denmark, France, Germany, Italy, Netherlands, Portugal, Spain, UK and Norway. 

The purpose of the meeting was to agree what we want to achieve (the vision), and how we intend to reach our goals (the mission).  It also set plans in motion for specific activities in priority areas that should ultimately lead to better access to optimised care for people with FA across Europe. More information about the meeting will be published shortly.

Here is a short summary video to give you a flavour of the meeting.

The first face-to-face meeting of Patient Support Group Representatives was held in Madrid on  November 4th 2022 after 2 years of regular online meetings. See more in the post below.