By Tetiana Mykhailova | Executive director
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.
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