The New Horizon Talks - podcast cover

The New Horizon Talks

CSL Behringwww.cslbehring.com
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.
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Episodes

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-stakeholde...

Feb 23, 202328 min

Episode 6: Leveraging Real World Evidence for Advanced Therapy

This episode explores how real-world evidence is changing healthcare, its value in improving patients’ outcomes, its role in supporting R&D in advanced therapy and uptake of this innovation by health systems. It will discuss issues such as how to deal with evidence gaps in HTA and the role of RWE. It will reflect on the importance of the European Health Data Space in leveraging RWE collected in Europe and its benefits for rare disease patients. It will also look at how to ensure that health ...

Oct 27, 202220 min

Episode 5: Advancing Europe's leadership in rare disease innovation

This episode explores the EU’s leadership in response to rare diseases and innovation in the area, with a special focus on advanced therapy research and development. What are the achievements made in Europe and where are the remaining gaps? How can Europe achieve leadership in innovation for rare diseases? Guests: Yann Le Cam, CEO, EURORDIS Elisabetta Zanon, Director, EU Public Affairs & Advocacy, Alliance for Regenerative Medicine, Europe

Sep 20, 202223 min

Episode 5: Advancing Europe’s leadership in rare disease innovation (Bonus edition)

This episode explores EU’s leadership in response to rare diseases and innovation in the area, with a special focus on advanced therapy research and development. What are the achievements made in Europe and where are the remaining gaps? How can Europe achieve leadership in innovation for rare diseases? The bonus edition provides insights about the impact of the COVID-19 pandemic on rare disease patients and innovation in the field. Guests: Yann Le Cam, CEO, EURORDIS Elisabetta Zanon, Director, E...

Aug 11, 202220 min

Episode 4: Taking the Ethical Debate Forward

This conversation takes a deep dive into the ethical issues surrounding cell and gene therapies. What are the main questions from patients and the broader public? What are the key myths surrounding these therapies? It explores topics such as transparency, responsibility in science and research efforts, inclusivity & non-discrimination in access. Guest: Hervé Chneiweiss, Chairman, INSERM Ethics Committee; Chair, UNESCO International Bioethics Committee; member, WHO Expert Advisory Committee o...

Oct 19, 202126 min

Episode 3: Advancing For and With Patients

This podcast examines patient centricity in cell and gene therapy, exploring how care must be planned and delivered to be responsive to individual patient preferences, needs and values. What exactly does patient focus mean, when talking about advanced therapies? What should patients know before embarking on the therapy and how do patient advocacy organisations support patients in this process? Guest: · Durhane Wong-Rieger, Chair, Rare Disease International Council ---- Abbreviations: · HTA: Heal...

Oct 06, 202129 minSeason 1Ep. 3

Episode 2: Transforming the Future of Healthcare Together

In this episode, we look at the unique policy challenges presented by cell and gene therapies from research & development through to patient access; and the role of multi-stakeholder collaborations, in particular those active in supporting European policymaking. How can we, together, deliver these innovative therapies to patients and society, efficiently and safely? Guests: • Amanda Bok, Chief Executive, European Haemophilia Consortium (EHC) • Alexander Natz, CEO, European Confederation of P...

Sep 27, 202128 min

Episode 1: New Horizons for Rare Disease Patients

This episode provides an introduction to cell and gene therapies and touches upon the historical, scientific, clinical, policy and regulatory considerations surrounding their development and use, with forward-looking perspectives from our guests on the future of this new chapter of medicine. Guests: · Professor Luigi Naldini, Director, San Raffaele Telethon Institute for Gene Therapy · Avril Daly, Vice-president, Rare Diseases Europe (EURORDIS); CEO, Retina International ---- Abbreviations: · CA...

Sep 22, 202129 minSeason 1Ep. 1

Bonus episode: Advancing For and With Patients

This podcast examines patient centricity in cell and gene therapy, exploring how care must be planned and delivered to be responsive to individual patient preferences, needs and values. What exactly does patient focus mean, when talking about advanced therapies? What should patients know before embarking on this therapy and how do patient advocacy organisations support patients in this process? Guest: • Durhane Wong-Rieger, Chair, Rare Disease International Council Abbreviations: · HTA: Health T...

Aug 27, 202120 min
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