The Pulmonary Hypertension Association of Europe reports and warns about the COVID-19 coronavirus
At the office of CF “Sister Dalila” there was held a workshop of making a leaflet
The Ukrainian Medical Society in Lviv became a platform for communication on orphan diseases with the active assistance of the head of the medical society Oleh Duda.
The meeting of the Commission for Social Protection of the Population and ATO Participants at the Lviv Regional State Administration was held. During the meeting, we, the PH Urda representatives, together with members of the Commission, heard a report from the LODA Department of Social Protection for 2019.
On Rare Disease Day - February 29th The Orphan Bell movement got its own logo

They need help

Tetiana Vlasyuk

I, Tetiana Vlasyuk, the mother of a child suffering from pulmonary arterial hypertension - Vlasyuk Anastasia, born 10.21.2014, living in the Volyn region, Novovolynsk city.

The diagnosis was defined in the Research Center of Pediatric Cardiac and again in the Kiev heart center.

My child needs an expensive treatments, such as: "Revatio" ("Sildenafil"). The cost of these in our pharmacies - 28000 UAH. Unfortunately, our family can't pay these expensive medicines.

Please, help our daughter.

We had been taking Sildenafil for a year, but before the last test the child had been taking surrogates:  "potentiale", "viagra", However, the results of sensing cavity of the heart showed, that these are not effective. Latest appointments: "Revatio" ("Sildenafil"), "Captopril" "Veroshpiron."