"The Day of Orphan Diseases"
26 February 2021 - 28 February 2021
12 Hlyboka Street, 79013, Lviv, Ukraine
Hosted by Pulmonary Hypertension Ukrainian Rare Disease Association
PROGRAMME OF THE EVENT
On February 26, 2021, together with the movement of the orphan community "Orphan Bell" we will hold a meeting "The Day of Orphan Diseases" in the Lviv Regional State Administration (RSA) with the leadership of the Lviv region, representatives of the health and social protection of Lviv region. The meeting will consist of discussions about the situation of orphan patients in Lviv region, their access to diagnosis, vital treatment, rehabilitation, including the following diseases: pulmonary hypertension, tuberous sclerosis, mucopolysaccharidosis, cystic fibrosis, Gaucher disease, CMA, cdmeromet, 5 rickets.