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

Irene Sydorchuk

My name is Irene Sidorchuk.


Today I woke up with a thought about  ​​a dream that has never left me for a long time ...the dream... But let`s talk about it later.

I was born in Kyiv. My mother was then said that I had  that pathology and it was  probably congenital heart disease. Since birth till 5 I have been at the Yanovsky Institute of Thoracic Surgery where I was put one more diagnosis - pulmonary hypertension but I wasn`t explained how to live with this disease. I had been consulted by Amos Mykola Mikhailovych. He said I was not operable ... and I had to live with his illness. So I started to take the ordinary riboksyn and kokarboksilaza.

Then came long time consultations in the children's kardiorevmatologic center of Kiev ( wnich is on the Left Bank of the Dniper) in Dr. Evgeniya Petrivna Smirnyakova. Yes, she supported me as she could but the phrase she once said to my mother crossed kind attitude to her. She said the maximum that  my mom could count on – that was the following picture:  I'd be home, I would not be able to learn, the only thing I could do was to  knit or embroider (choose one of them) ... so “Teach daughter to embroider. .. and do not expect more ... and do not really expect at all”.

I learned to embroider and knit, too (but only spokes).

I`ve finished school with a silver medal, Kyiv Medical College №2, worked a long time at Shalimova Institute of Surgery and Transplantology (I  knew Alexander Shalimow personally, he`s the most beautiful person).

And thanks to my medical connections or  thanks to God`s blessing, the  fate gave me the chance to get acquainted with Lydia Fyodorivna, the brilliant doctor and professor. It was she who taught me how to live and what to do in order my  health not to deteriorate but to keep it at balance.

So, then I enered A. A BohomoletsMedicalUniversity, the Faculty of Pharmacy (distance learning) and I have graduated from it.

I spent wonderful years of my youth.

I hope to spend so wonderful years of my aging.

I write poems, sometimes very well. I love to travel and to explore the world.

But I still want to live more fully and to  inhale all the joy and beauty of life  deeply, not only a half of everything ...

Without therapy, Ishall not be able to do it, no matter how I try and how strong-willed I am.


And now let`s talk about the  dream that I started talking about at the beginning of my story. It is a dream to have a baby! Naturally having my pathology, I am not able to do it. If only I could use the services of a surrogate mother. There are no such women among my friends. If onle there were people who could help me to raise money for IVF and surrogacy. The sum of money is not affordable for me and my husband and for our whole family. The time inexorably goes forward and my reproductive system (where to get material for IVF) unfortunately also gets old with me.

Nevertheless, I believe that dreams will come true sooner or later!

I love, believe, hope and live!