People with rare diseases began to ski

On February 27, a ski race were held on the International Day of Rare (Orphan) Diseases at the skiing sports complex Protasiv Yar. More than fifty people with such diseases as pulmonary hypertension, mucopolysaccharidosis, phenylketonuria, bullous epidermolysis, cystic fibrosis, juvenile rheumatoid arthritis, torsion dystonia, etc. took part in it.
“On this day, those who constantly have to fight for their own lives will try skis. They want to prove that with proper treatment they can live a full life. We hope to attract the authorities’ attention to the need of ensure access to the treatment of all orphan patients as children and adults alike» – say the organizers.