Ikcc's March news letter!
Ikcc's Highlights from affiliate organisations
This section profiles the important work to support kidney cancer patients from our affiliate organisations.
Please see the IKCC website www.ikcc.org for a full list of organisations in our global network.
VHL Family Alliance Greece VHL
Family Alliance Greece is founded and led by Athina oz Alexandridou, whose family carries the von Hippel Lindau (VHL) gene that causes kidney cancer in some family members.
The organisation started as a patient support group, helping patients access genetic tests for VHL.
The alliance also advocated on behalf of VHL patients to have VHL recognised as a rare incurable disease. Recently, they succeeded in having VHL covered by public health insurance in Greece and are collaborating with international doctors for surgical treatments for VHL lesions.
They would like to thank the IKCC for their guidance with respect to the care and treatment of VHL patients with kidney cancer metastases.