A new medical alliance aimed at solving the problems of people with rare (orphan) diseases is to be created.
Social organizations and medical scientists, including the All-Ukrainian public union “Orphan diseases in Ukraine” (only Ukrainian), the Centre for Rare Diseases, Ukrainian Institute Clinical Genetics “KNMU” and the fund “Ukraine – for children of Kharkiv” have declared their backing on the initiative.
They decided to combine their efforts with government agencies and create a unified socio-medical system.
The main goal of the Alliance is to show the public, the authorities, physicians and social services, the “face” of the disease, as well as possible means of active prevention and treatment strategies.
Rare disease, also referred to as an orphan disease, includes diseases which occur with a frequency below 1:2000, but threaten human life.
Over the past 15 years, more than 5,000 patients with a variety of rare diseases were recorded in the Kharkiv specialized medico-genetic center.
International Rare Disease Day is celebrated on February 29.