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

Dear firends,

Because of your support, a grant from GlobalGiving, and generous contributions from Ukrainian donors, over the past three months our foundation has provided medicines, specialized therapeutic nutrition, and essential medical supplies to more than 25 families of children and adults living with rare diseases.

Among the conditions we supported are phenylketonuria, congenital ichthyosis, epidermolysis bullosa, systemic scleroderma, mucopolysaccharidosis, granulomatosis with polyangiitis (Wegener’s), systemic lupus erythematosus, Shwachman–Diamond syndrome, muscular dystrophy, as well as rare endocrine and other complex disorders.

Each family has a different story — but they share one common challenge: the extremely high cost of treatment. In Ukraine, many patients with rare diseases must purchase medicines, specialized nutrition, and medical supplies at their own expense. These costs are continuous and often overwhelming.

This support is especially critical as the war in Ukraine continues. Many families have lost stable income, been displaced from their homes, or are living under constant stress and uncertainty. In such circumstances, access to life-sustaining treatment becomes even more fragile.

That is why our foundation steps in to provide an initial course of treatment, ensuring that therapy can begin or continue without interruptions. At the same time, we assist families in preparing and submitting official appeals to local health authorities, advocating for access to state-funded medications and long-term care.

Your support does more than meet urgent medical needs. It gives families the reassurance that they are not facing these challenges alone.

Thank you for standing with Ukrainians living with rare diseases. Please consider continuing your support or sharing this project. Every contribution helps another family receive urgently needed treatment.

Links:

• Medicines for three girls - Milana, Stefania, and Sofia
• Specialised nutrition for children and young people
• Medical supplies for a baby with congenital ichthyosis