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The New Horizon TalksAuthor: CSL Behring
Welcome to The New Horizon Talks, a podcast series by CSL Behring. Hosted by Science Writer and Broadcaster Vivienne Parry, it explores issues surrounding cell and gene therapies and their promise to change the lives of people living with rare and serious diseases. With a European focus, each episode features leading experts, scientists, healthcare professionals, patients and patient representatives. Join the conversation on social media using #NewHorizonTalks. Language: en Genres: Health & Fitness, Medicine Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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Episode 7: Improving Equity in Patient Access to Specialised Care and Treatments through the European Reference Networks
Thursday, 23 February, 2023
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
