Endo ERN X eUROGEN Improving Rare Disease Care in Ukraine Access to ERNs and Expert Resources

Описание: This joint webinar will explore how Ukrainian clinicians and patient representatives can collaborate with European Reference Networks (ERNs) to strengthen rare disease care. The programme will introduce the ERN system, feature insights from Endo-ERN and ERN eUROGEN, and outline how to engage through the Clinical Patient Management System (CPMS).

Speakers include Tetiana Kulesha, ePAG representative from Orphan Diseases of Ukraine, with additional speakers to be confirmed. A case example and Q&A are planned to illustrate how ERNs connect expertise across Europe to benefit patients in Ukraine.

Programme outline

Welcome & Introduction (5 min) Speaker: Charlotte van Beuzekom, EU Senior Project Manager & Grants

What Are ERNs? (10 min) Speaker: Michelle Battye, Programme Manager, ERN eUROGEN

Spotlight on Two ERNs: Endo-ERN and ERN-eUROGEN (20 min, 10 min each) Speaker: Prof. Alberto Pereira, Endo-ERN Coordinator & Prof. Peter F.A. Mulders ERN-eUROGEN Coordinator

The Process: How Ukrainian Clinicians Can Engage (10 min) Speaker: Joao de Sousa, IT Business Coordinator, ERNs, European Commission

CPMS: The Clinical Patient Management System (10 min) Speaker: Greta Ginski, CPMS Helpdesk Manager & Darren Shilhan, Lead IT and Data Performance Analyst

Real-World Example or Case Study (15 min) Speaker: Dr. Volodymyr Davydiuk, Medical Geneticist, Khmelnytskyi City Children’s Hospital

The Patient Voice in Rare Disease (10 min) Speaker: Tetiana Kulesha, Orphan Diseases of Ukraine Public Organisation

Q&A and Open Discussion (10 min)