AOP Health was proud to sponsor
the panel “New partnership for rare diseases"
at European Health Forum Gastein (EHFG).
Representatives from patient organizations, research institutions, pharmaceutical companies, and authorities discussed future flagship financing and R&D solutions for accessible care.
“I believe that there are too few solutions for patients with rare diseases. To improve their situation, all system partners must work together in a constructive way. I expect a trend-setting discussion that leads to new approaches to provides the best possible care for patients”, says panelist Dr. Günther Krumpl, medical doctor, pharmaceutical entrepreneur and member of the Governing Board of AOP Orphan International AG.
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New partnership models for rare diseases
Future flagship financing and R&D solutions for accessible careUk
Friday, 1 October 2021 | 11:00-12:30 | Room 1
Organized by AOP Health
Rare disease patients are often left outside – either by lacking research and development or by public payers refusing to pay for the expensive treatment. After decades of frustratingly slow progress, it is time for a rethink to adopt alternative partnership and financing models that incentivize investment in orphan drug development and provide accessible patient care.
What new approaches can reward innovation whilst reducing financial risk in rare disease research? How can we move away from a system driven by shareholder interest and deliver orphan drugs as a public good to safeguard supply and access for patients? Why do current PPP models not seem to suffice in the rare disease space, and how can stakeholders better collaborate to share the risk in research and development?
This session looks to trigger public institutions, universities, and private companies to build more effective solidarity towards rare disease patients - to support new drug research with better knowledge, assessment and characterization of treatment whilst ensuring affordable and continued market access. Join us to brainstorm and discuss ideas that question existing business models, explore new approaches to financing rare disease treatment, and to create a flagship for the future.
- DIMITRIOS ATHANASIOU, Board Member, European Patients' Forum
- JO DE COCK, Health Systems Advisor, Belgium
- DR MICHAEL FREISSMUTH, Chairman, Medical Institute of Pharmacology, University of Vienna
- DR GÜNTHER KRUMPL, Member of Governing Board, AOP Orphan International AG
- ANITA PALLARA, Patient Advocate, FamiglieSMA
- LABRINI PAPAGEORGIOU, Global Access Policy Leader, Roche
- CHRISTA WIRTHUMER-HOCHE, Head, Austrian Medicines and Medical Devices Agency
- RICHARD BERGSTRÖM, Vaccine Coordinator, Government Offices of Sweden
The video record of this session will be available in the nearest time.