Organizations Rally to Help Ukrainian Rare Disease Patients

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave.

The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult, Zamorska recently told BioNews, Inc., the publisher of this website. The journey and transition have been especially challenging for her son Andrii, who has epidermolysis bullosa (EB) and is mostly bedridden because of his fragile, blistering skin.

Patients with EB need boxes of backup bandages to treat wounds, heaters to stay warm because of thin skin, and a blender to soften food because of scarring in the mouth and esophagus. Zamorska said that 24/7 care is needed for people with more aggressive forms of EB, such as 19-year-old Andrii, who has severe generalized recessive dystrophic EB.

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