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Episode 7: Improving Equity in Patient Access to Specialised Care and Treatments through the European Reference Networks
To mark Rare Disease Day 2023 focused on “equity”, the New Horizon Talks turn to European initiatives which can effectively contribute to fostering equity in patients’ access to diagnosis, specialised care and treatment for rare diseases. This episode explores the role of European Reference Networks (ERNs), with a specific focus on the ERN on rare hematological diseases (EuroBloodNet). Speakers discuss achievements to date, remaining challenges, and how new policy frameworks and multi-stakeholder partnerships can help strengthen the ERNs.
Guests:
Victoria Hedley, Rare Disease Policy Manager, Newcastle University
Prof. Cédric Hermans, Head Haemostasis and Thrombosis Unit / Haemophilia Centre of the Saint-Luc University Hospital, ERN member representative
Baiba Ziemele, Chairwoman of the Board, Latvian Hemophilia Society, ePAG advocate
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To mark Rare Disease Day 2023 focused on “equity”, the New Horizon Talks turn to European initiatives which can effectively contribute to fostering equity in patients’ access to diagnosis, specialised care and treatment for rare diseases. This episode explores the role of European Reference Networks (ERNs), with a specific focus on the ERN on rare hematological diseases (EuroBloodNet). Speakers discuss achievements to date, remaining challenges, and how new policy frameworks and multi-stakeholder partnerships can help strengthen the ERNs.
Guests:
Victoria Hedley, Rare Disease Policy Manager, Newcastle University
Prof. Cédric Hermans, Head Haemostasis and Thrombosis Unit / Haemophilia Centre of the Saint-Luc University Hospital, ERN member representative
Baiba Ziemele, Chairwoman of the Board, Latvian Hemophilia Society, ePAG advocate