Strengthening the representation of rare disease patients in the Ministry of Health

We received good news from the Public Union “Rare Diseases of Ukraine”:

The Ministry of Health of Ukraine has updated the composition of the group of experts and specialists involved in the work of the Permanent Working Group of the Ministry of Health on sectoral support for procurement in specific areas.

From now on, the group includes representatives of the Public Union “Rare Diseases of Ukraine”:
— “Procurement of medicines for citizens with cystic fibrosis” — Larysa Voloshyna, member of the Union, President of the All-Ukrainian Association for Assistance to Patients with Cystic Fibrosis.
— “Medicines for children with dwarfism of various origins” — Tetiana Mykhailova, member of the Union, Executive Director of the Charitable Foundation “Orphan Tits” (note: organization name transliterated).
— “Medical devices for citizens suffering from epidermolysis bullosa” — Tetiana Kulesha, Chair of the Board of the Public Union “Rare Diseases of Ukraine”.

This is an important step toward ensuring that the voice of patients is heard where decisions on access to treatment are made. After all, representatives of patient organizations best understand the real needs, challenges, and consequences of delays or lack of therapy.

We continue working to ensure that representatives of the Union are also involved in other expert groups across various rare disease areas. Systemic patient representation is about high-quality decisions, transparency of processes, and efficient use of resources.

We thank the Ministry of Health of Ukraine for its trust and openness to cooperation.