VHLFA Greece has been doing some pretty amazing work in putting von Hippel-Lindau and kidney cancer on the map!
With the help of Perceptions Consulting (www.perception.com.gr) they organized a press conference at Divani Caravel, a large central hotel in Athens, to interest the press in this rare cancer syndrome. VHL causes multiple problems, including kidney cancer and brain tumors. About 25 health reporters attended the press conference last July, with presentations by a urologist, a geneticist, an endocrinologist, and the patient president of VHLFA Greece. As a result, there have been more than 100 references in newspaper and internet articles. The health reporter community is finding VHL research a fascinating topic, as it opened the door to genetic research on kidney cancer in general.
VHLFA Greece has already identified 25 extended families with many members affected by VHL. They have translated the VHL Handbook into Greek, making it available for purchase through Amazon.com. They have doctors on their team in Athens and Thessaloniki, and are working to develop a center of excellence for treatment of VHL and other kidney cancers in major hospitals in Athens and Thessaloniki.
They have joined forces with Eurordis, ECPC, PESPA, IKCC and of course the VHL Alliance International (US).
The following internet resources are available in Greek and can be translated using automated translation in your browser:
- https://www.facebook.com/vhlgr/
- https://www.rareconnect.org/en/community/von-hippel-lindau/article/new-vhl-support-group-in-greece
- http://vhlgr.blogspot.com/
For one example of the coverage from this press conference, see this web page in Greek which can be easily translated into English or another language http://healthday.gr/index.php/el/health/1169-vhl-to-adiagnosto-syndromo-klironomikou-karkinou
