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European Health Forum Gastein 2023: European Rare Disease Research in Crisis? - A Reflective Summary

Gastein / Austria, September 28, 2023 - AOP Health hosted a vital Hybrid session, "European Rare Disease Research in Crisis? An All-Hands Approach to Secure Innovation", during the European Health Forum Gastein 2023.

Peter Loffelhardt, President and Founder of the Global MPN Scientific Foundation, steered the discussion, enriching it with his unique perspective as a PV patient. This event was a significant moment for the MPN community, showcasing our commitment to international advocacy for rare diseases. You can watch the full video here:

Content guide

About the Insightful Session

The session delved into the dynamic realm of rare disease research, acknowledging its challenges while highlighting immense opportunities for innovation. It emphasized the urgent need for enhanced patient involvement, interdisciplinary collaboration, and increased funding.

Peter Loffelhardt's role as the session's moderator bore significant weight, underlining the critical importance of patient advocacy and representation. His unique perspective as a rare disease patient added depth and urgency to the discussion, emphasizing an extension of the traditional triad of patients, physicians, and pharmacists to include a fourth essential "P," politicians.

“As a patient and patient representative, I urge for action in the face of the current rare disease research crisis, with limited progress in addressing unmet need. Let's unite, break barriers, and prioritize innovative solutions to transform lives. Patients can't wait – it's time to make a difference”

Peter Loffelhardt

Insightful Speakers

The session featured distinguished speakers, each possessing profound expertise and experience in the field:

  • Pernille Weiss, MEP, The European People's Party Group

  • Susanne Greber-Platzer, Senior Supervisor, Medical University of Vienna

  • Daria Julkowska, Scientific Coordinator, European Joint Programme on Rare Diseases

  • Alexander Natz, Secretary General, EUCOPE

Advancing Rare Disease Research: A Global Commitment

The session marked a crucial step forward, uniting stakeholders to bolster understanding and collaboration in the rare disease landscape. European Health Forum Gastein 2023 demonstrated our dedication to patient-centric innovation, steering rare disease research towards a more promising and inclusive future.

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