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:
Credit: European Health Forum Gastein
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.
Credit: European Health Forum Gastein