Vienna, 28.02.2025. In light of Rare Disease Day 2025, AOP Health invited experts to a panel discussion, in cooperation with the renowned daily newspaper Die Presse. The discussion addressed the topic "Data makes the invisible visible", exploring the role data plays in the research and development of therapies for rare diseases.
Rare Disease Day Panel Discussion with Die Presse
February 28th 2025
Imagine living with a condition that even your doctor may not recognize.
For millions of people with rare diseases, this is their reality.
For millions of people with rare diseases, this is their reality.
Watch now.
As part of the panel discussion, moderated by Eva Komarek from Die Presse, the following experts shared their perspectives on the topic:
Dr. Martin Steinhart, CEO of AOP Health
Prof. Tanja Stamm, Institute of Outcomes Research, MedUni Vienna
Dr. Rainer Riedl, Co-Founder and president of DEBRA International and Pro Rare Austria
To watch the Die Presse panel discussion in its entire length, view here.
Dr. Martin Steinhart
For us at AOP Health, data is much more than numbers—it is the key to making rare diseases and their impact on patients and on our healthcare system visible.
All three experts concur that data makes the invisible visible: it not only helps us better understand diseases and develop targeted medications but also supports the evaluation of therapies and their impact on patients. Moreover, data plays a crucial role in identifying patients' needs. To ensure that patients have a voice in the drug development process, it is particularly important to incorporate their perspectives into study designs at an early stage.
This shared understanding underscores the immense potential of data in transforming the landscape of rare disease research and treatment. By leveraging data and scientific innovation AOP Health remains committed to its mission to improve the lives of those affected by rare diseases.
Read more here:
https://www.aop-health.com/global_en/press/press-releases/data-rare-disease-research/
About AOP Health
AOP Health is a global enterprise group with roots in Austria, where the headquarters of AOP Orphan Pharmaceuticals GmbH ("AOP Health") is located. Since 1996, the AOP Health Group has been dedicated to developing innovative solutions to address unmet medical needs, particularly in the fields of rare diseases and intensive care medicine. The group has established itself internationally as a pioneer in integrated therapy solutions and operates worldwide through subsidiaries, representations, and a strong network of partners. With the claim "Needs. Science. Trust." the AOP Health Group emphasizes its commitment to research and development, as well as the importance of building relationships with physicians and patient advocacy groups to ensure that the needs of these stakeholders are reflected in all aspects of the company’s actions.
Photocredit Portraits: "AOP Health/Studio Koekart" and "Die Presse / Roland Rudolph"