(a) whether a number of people are suffering from a rare genetic disorder Von Hippel-Lindau (VHL) syndrome in the country and if so, the details thereof, State/ UT-wise;
(b) whether the Government hospitals are equipped with the technology to diagnose and treat people with VHL syndrome; and
(c) if so, the details thereof and if not, the corrective steps taken/proposed to be taken by the Government in this regard?
THE MINISTER OF HEALTH AND FAMILY WELFARE (DR. HARSH VARDHAN)
(a): Data regarding number of people suffering from rare genetic disorder Von Hippel Lindau (VHL) syndrome in the country are not maintained centrally.
(b) & (c): The diagnosis of the disease is mostly by clinical examination aided by imaging techniques like CT scan, Positron-Emission tomography, computed tomography, specific gene mutation demonstration. The treatment is according to the type, site and number of tumors. Diagnostic facilities are available in the tertiary care Central Government Hospitals like AIIMS and PGI Chandigarh.