ELF Council member, Oksana Kulish Skaara, has welcomed the opening of a new dedicated centre for children with pulmonary hypertension in Ukraine.
The Children’s Center for Pulmonary Hypertension in Lviv, Ukraine opened on 28 February 2024 thanks to the hard work of the Sister Dalilah Charitable Foundation, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA), the Paediatric Cardiology Department and hospital management teams at the St. Nicholas Hospital of the First Medical Union of Lviv and the Pulmonary Hypertension Association (PHA).
The new centre in Ukraine aims to improve the diagnosis and treatment of children with pulmonary hypertension, a rare disease that affects about 15-50 people in every million. Although it cannot be cured, in the past decade great improvements have been made in the understanding of the condition.
Oksana Kulish Skaara is the European Patient Ambassador Programme (EPAP) representative on the ELF Council and founder of Ukrainian organisation, PHURDA. Announcing the news, Oksana said:
“I founded PHURDA in 2013 to better the lives of pulmonary hypertension patients in my home country. The launch of the centre on the eve of the International Day of Rare Diseases was a big achievement for all involved.
“Children and families will now find support and the resources they need to treat pulmonary hypertension and the centre will continue to improve treatment and support. This is important work so that every child battling this disease can lead a happy and healthy life.”
At the centre, patients can access multi-disciplinary care. This means children with pulmonary hypertension can be supervised by a range of specialists and access effective treatment and medication from this new hub in Lviv. This is a huge milestone for lung health in Ukraine says Dimitris Kontopidis, ELF Chair:
“As patients and patient representatives we face many challenges unique to our conditions and our country’s health systems. Oksana is a passionate voice for patient organisations in eastern Europe. She continues to fight for this community and those who do not have the same access to treatment care and resources.
“This is a great success for Oksana and those working to improve treatment for pulmonary hypertension in Ukraine.”
Patient Spotlight: Oksana Kulish Skaara, EPAP representative on the ELF Council
