Supporting Ukrainians living with Rare Diseases

Dear friends,

Thank you for your continued support of our foundation’s projects and for standing with Ukrainian families living with rare diseases.

Today, we would like to share one of the important areas of our work - supporting people living with epidermolysis bullosa (EB), a rare and complex genetic disorder that affects every aspect of daily life.

For most people, a gentle touch, movement, or wearing clothes are ordinary parts of everyday life. But for people with EB, these simple actions can become a risk. Because their skin is extremely fragile, even minor friction can cause painful wounds and blisters that require constant medical care.

Epidermolysis bullosa is a rare inherited condition caused by changes in the proteins that normally hold the layers of the skin together. In simple words, the skin loses its strength and protection, making it vulnerable to injury. In severe forms, the disease can also affect mucous membranes, making eating, swallowing, and maintaining overall health more difficult.

There is currently no cure for EB. People living with severe forms of this condition need lifelong care, including special wound dressings, antiseptics, healing products, pain management, infection prevention, nutritional support, and sometimes surgical treatment.

Thanks to your support, a grant from GlobalGiving, and generous contributions from Ukrainian donors, our foundation was able to provide essential medical supplies and treatment support to 5 adults living with epidermolysis bullosa:

• 28-year-old Maksym from Kyiv
• 29-year-old Iryna from Sumy region
• 43-year-old Liubov from Kyiv region
• 31-year-old Oleksandr from Zakarpattia region
• 20-year-old Viktor from Kyiv

For people with EB, these supplies are not simply medical products - they are a vital part of everyday life. They help protect fragile skin, reduce complications, and make daily care safer and more manageable.

Your support helps people living with rare diseases receive the care they urgently need. It shows families that even in the most difficult circumstances, they are not alone.

Thank you for standing with Ukrainians living with rare diseases. Together, we continue transforming compassion into real support and hope.

Links:

• publication on facebook, March 2026
• publication on facebook, May 2026