European FA Organizations Form Umbrella Group

Following a successful bid for an international support grant offed by FARF, Fanconi Hope in the UK and Fanconi Anemie Werkgroep of the VOKK (Dutch Parents, Children and Cancer Association), Netherlands, are setting up a new group called FA Europe. This will be an umbrella organization of patient support groups, clinicians, scientists and individuals with FA from across Europe, whose collective voice, reach and influence should be greater than that of the individual organizations. An umbrella organization should allow this group to engage with many major European organizations because of the potentially large numbers involved.

Taking advantage of the presence of many Europeans representatives at the 2019 FARF Symposium in Chicago, an FA Europe workshop was held to help identify the top priority areas of the new group. This was in preparation for a formal kick-off meeting in Utrecht, Netherlands, planned for April 2-4, 2020. At this meeting, mission and vision statements will be developed, along with a set of objectives and a plan of action on how to achieve them. This Chicago workshop included representatives from France, Italy, Germany, Spain, the Netherlands, the UK and the US and also included feedback from an earlier survey of priority areas by the Danish Patient Support Group.

The initial consensus on priorities for FA Europe centered around four areas:

  • Improving FA care systems
  • Cancer screening and management
  • Research collaboration across Europe
  • Setting up the FA Europe organization

Members of European patient support groups, and European researchers together at the 2019 Scientific Symposium

The next step is to work with the countries to be represented at the Utrecht meeting in 2020 to establish a final agenda and the definitive list of attendees.

Mieke Spaink of the VOKK organization in the Netherlands, is the contact for the organization of the Utrecht Meeting (

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