ECPC is glad to approve as associate member the application request of VHLFA ALLIANCE ORG. GREECEE ORG. GREECE (ΣΥΜΜΑΧΙΑ ΟΙΚΟΓΕΝΕΙΩΝ ΚΑΤΑ ΤΗΣ ΝΟΣΟΥ VHL).
VHL is an abbreviation of Von Hippel-Lindau syndrome, a hereditary (genetic) cancer syndromer characterized by the formation of cysts in many different parts of the body, mainly the kidneys, the pancreas and the genital tract. People affected with VHL are at an increased risk of developing tumours at any point during their lifetime.
The aim of the organisation is to gather expert knowledge from abroad, by participating to relevant symposiums and to translate and share this knowledge with doctors and caregivers in Greece. They also help patients who are without insurance to have surgery before the disease becomes life-threatening.
VHLFA ALLIANCE organises events to raise awarness about VHL to young people and advocates for the needs of VHL patients at government level. Their main message is to alert people about one of the most undiagnosed syndromes given that patients can have a good quality life if detection is done early.
If you or someone in your family has been affected by kindey cancer or cancer of the adrenal glads at an early age, do a genetic test for V.H.L.!
We were impressed by the commitment of Mrs. Alexandridou and we wish her every success with the ambitious plans she has set for the organisation.
More information about their activities can be found on their website: http://vhlgr.blogspot.gr/
For more information on VHL you can also visit the VHLA ALLIANCE INTERNATIONAL page by clicking here.
Welcome to ECPC!