Новини

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

Zoryana Hud
23/05/2014

           Hello to all candid people!  My name is Zoryana Hud. I am  29. I was born in 1984. Diagnosis: a congenital heartdisease, pulmonary hipertension, hepatits C.

             I am the mother of a five year old boy. Pregnancy was contraindicated to me by the physician but I decide to give birt myso desirable child. On giving birth to my child Dmytryk in 2008 I started feeling myself worse, it was difficult for me to breathe. I couldn`t go at long distances as I was short of  breath due to high lung  pressure, I just grasped rand my hands went blue.  Then I consulted docters and after a series of medical examinations in July 2013  in Kyiv “ Heart Centre Clinic”  I was put another diagnosis: hepaptitis C. It was an ordeal to me but I had to fight  against the dreadful disease. My son always gave and still gives me inspiration not to fall into despair. When he hugs me I understand, he needs me, a mother!

         The treatment is very expensive  and without your help I will not cope with the disease. In order to breathe I  need such medicines as VENTAVIS and SYLDENAFIL. My treatment per month costs 17,565 UAH. Your every help is POWER for me.