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February 29 is the Day of Orphan Diseases

February 29, 2024, 12:10 46 Author: Natalya Moroz, Yana Lobanok This is a reminder of the importance of awareness of family doctors and early diagnosis, of psychological and financial support for families.

February 29 is the Day of Orphan Diseases

There are such diseases that occur very rarely. They are so-called - rare or orphan. For thousands of years, children with these diseases sometimes did not live to be one year old. Nowadays, the length and quality of their lives have improved significantly, but treatment and support sometimes cost thousands of hryvnia per month.

The most common diagnosis among such diseases is cystic fibrosis. In Ukraine, its frequency is 1 in 2300 newborns. You and I have been supporting children and young people with this diagnosis for twelve years, and during this time, we have provided assistance worth over 12 million hryvnia.

After the full-scale invasion of Russia, most cystic fibrosis patients were evacuated abroad. The lack of medicine, electricity for inhalers, and oxygen concentrators became no less a threat to their lives than enemy shelling. We actively helped with evacuations and delivered medicines, even to cities occupied by the enemy, where a real humanitarian disaster was observed. And we sincerely rejoiced when the priceless cargo finally reached our wards!

February 29th happens once every four years. That is why this day is dedicated to rare diseases. This is a reminder of the importance of awareness of family doctors and early diagnosis, of psychological and financial support for families. After all, living a long and quality life with a rare disease is incredibly expensive, even with state support. When the budget does not cover all needs, you and I come to help.

Friends, on this day, we hope for your support for children diagnosed with cystic fibrosis and the pulmonology department of the regional children's hospital. And to make the assistance even more significant, we offer to issue a monthly payment.

Happy Child foundation - effective help to the most needy children of the Zaporizhzhia region, Ukraine, since 2004

They need help:
Lev Ustinov
Lev Ustinov

Autistic Spectrum Syndrome

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