Beginning of VHL(von Hippel-Lindau)-Europe
Since three years representatives from various national VHL patient organisations have met to discuss common issues and help individuals in other countries to set up their own national organization. All with the strong belief that an European organization formed by national VHL patients associations that share the same aims would be a more effective way to serve the needs and support patients and their carers of this rare genetic tumor disease.
On October 22nd, the evening before the official start of the international VHL Symposium in Madrid, representatives of France, Germany, Greece, Hungary, Italy, the Netherlands and Spain met and founded the European VHL (von Hippel-Lindau ) Federation. First steps that will be taken is setting up a catalogue for centers of expertise and organizing a symposium for our young adults with VHL in 2015.
VHL Europa’s first board:
President: Ronald Westerlaken (The Netherlands)
Vice-President: Jean-Joseph Crampe (France)
Secretary: Athina oz Alexandridou (Greece)
Thesaurus: Gerhard Alsmeier (Germany)
The objectives of VHL Europa are
1) Supporting existing national VHL patient organisations and helping to set up new and foster cooperation between these national organizations in Europe and develop a common policy, if possible, between them, and to do everything that is related to this in the broadest sense, either directly and indirectly,
2) Improving situation of people affected with VHL in Europe
3) Promoting and sustaining research
Thanks to EURORDIS who sponsored two of our meetings.