Supporting Rare Disease Patients

Our dear Donors,

We are happy to share our news with you on the project progress in supporting Ukrainian people living with a rare (orphan) disease.

Thanks to Your donations, two patients with a rare diagnosis Pulmonary Hypertension received recently a life-saving medical equipment - oxygen concentrators. They are Liliya from Kyiv region (a small town near Bucha) and Maria from Kirovohrad region.

Pulmonary Hypertension is a rare condition that can affect people of all ages. Its treatment is expensive and lifelong. Special medications and oxygen therapy are needed everyday. Left untreated, it may cause heart failure, which can be fatal.

However because of the russian military aggression, Ukrainian orphan patients risk getting into situations where they are deprived not only of access to medicines and medical care.

In the first days of the war, the small town near Bucha where lives Liliya was occupied by the enemy troops and almost immediately was on the verge of a humanitarian disaster - there was no electricity, gas, heat, water. People cooked food on bonfires in the yards of multi-apartment houses, also saving themselves from the frost. The food and medicines reserves were quickly running out. Risking their lives, under constant fire, Liliya's children, the youngest of whom is 19 years old, tried to find special medicines for her. Fortunately, in mid-March Liliya's family was evacuated to Kyiv. But the life in the war occupation seriously affected the woman's health - soon she was hospitalized to a hospital in Kyiv.

After the deoccupation of the Kyiv region, Liliya returned home. She is very grateful to the donors for the oxygen concentrator.
Another patient - Maria from Kirovohrad region thanks the donors for the medical equipment as well. Now, both women have daily access to home oxygen treatment.

We are very grateful to all donors of GlobalGiving for the extremely important support, thanks to which our Foundation has possibility to provide rare disease patients with life-saving equipment in the conditions of war and humanitarian crisis in Ukraine.

We also thank for cooperation the NGO "Rare Diseases of Ukraine'' and the Ukrainian Association of Patients with Pulmonary Hypertension.

Links:

• post on the Foundation FB page

Our dear Donors,

We are happy to share our news with you on the project progress in supporting Ukrainian rare (orphan) diseases patients.

Thanks to Your donations, four donees of the Foundation received recently a life-saving medical equipment - oxygen concentrators.

They are Ukrainian patients living with a rare diagnosis Pulmonary Hypertension. This disease affects the heart and lungs, and significantly changes the quality of life. Its treatment is expensive and lifelong, and includes the oxygen therapy. In severe cases patients need a heart-lung transplantation.

We sent oxygen concentrators to Artem (16 y.o.) from Volyn region, Yulia (36 y.o.) who was forced to flee from Bucha to the western part of Ukraine in the first days of the war, Olena (26 y.o.) from Zhytomyr, and Inna (52 y.o.) from Kyiv region.

We are also happy to share with you the words of gratitude of Artem`s mother: "Thank you very much! This is a great help for us, may the God bless you!” 

Because of the war and its impact, rare diseases patients in Ukraine became more vulnerable.Now, with oxygen concentrators, they have  24-hour access to the respiratory in-home care they need.     

Your participation in our project https://goto.gg/54000 makes great encouragement for patients who remained in Ukraine in these hard times. Your support can significantly improve their health and quality of life in the conditions of humanitarian crisis and war in Ukraine.

Warm regards,

CF Orphanni Synytsi

Links:

• Artem`s "thank you" for the oxygen concentrator
• fb post about delivery of 3 oxygen concentrators in May 2022
• fb post about delivery of 1 oxygen concentrator in July 2022