AOP Health Emphasizes Collaboration and Patient-Centered Information on Rare Disease Day 2026
Why is the diagnosis and treatment of rare diseases so challenging? AOP Health, a global enterprise group with roots in Austria, is dedicated to addressing this critical issue. Since 1996, the company has been at the forefront of developing innovative solutions for rare diseases and intensive care medicine, operating internationally through a strong network of partners.
On Rare Disease Day 2026, AOP Health is highlighting the importance of collaboration and patient-centered information. “Working in rare diseases since 1996 has shown us that innovation is never a solo effort,” emphasized Melissa Fellner, Vice President Global Therapeutic Areas at AOP Health. “It requires continuous investment in data, open collaboration, and information that reaches patients in a form they can use.”
Key Insights at a Glance
- Collaboration: AOP Health is conducting five clinical studies in rare diseases, collaborating with 58 patient organizations and researchers at renowned international universities.
- Patient Engagement: The company is releasing a new episode of its German-language patient podcast to support patients in processing their diagnosis.
- Regulatory Requirements: New EU regulations require informed patient participation in evaluation processes.
- Health Literacy: AOP Health emphasizes the need for patient-friendly, evidence-based information to meet European requirements.
Why Collaboration Is Essential in Rare Disease Research
Between 27 and 36 million people in Europe are living with a rare disease, yet only around six percent have access to an approved treatment. Progress in diagnosis and treatment is often hindered by knowledge gaps, including the lack of clear, reliable, and patient-friendly information. Prof. Dr. med. Haifa Kathrin Al-Ali, a professor of internal medicine at Halle (Saale) University Hospital, underscores the importance of collaboration: “Without informed patients, it is difficult to generate evidence that truly represents daily clinical reality.” Close cooperation and an exchange on equal footing are essential, especially in rare diseases, to improve care and outcomes.
Why the Window for Action Is Closing Fast
Just as a ship needs a clear map to navigate treacherous waters, AOP Health needs robust, patient-relevant data to navigate the complex landscape of rare disease research. New EU regulations, such as joint clinical assessments (JCAs) and structured evaluation approaches like PICO, explicitly rely on evidence that reflects real-world needs and experiences. Eva Otter, Vice President of PHA Europe, emphasizes the urgency:
“To meet European requirements and participate effectively in evaluation processes, we need access to reliable, evidence-based information presented in a language we can understand.” The clock is ticking, and meaningful patient participation requires immediate access to appropriate knowledge and competencies.
AOP Health Mobilizes for Patient-Centered Innovation
AOP Health is taking concrete steps to address the challenges of rare disease research. The company is conducting five clinical studies in the field of rare diseases, collaborating with researchers at numerous renowned international universities and 58 patient organizations. These partnerships aim to leverage synergies and strengthen the evidence base.
On Rare Disease Day 2026, AOP Health is releasing a new episode of its German-language patient podcast to support patients in processing their diagnosis. This episode focuses on health literacy and addresses a central question: How can patients become well-informed and actively engaged in their care? AOP Health’s commitment to collaboration and patient engagement is a crucial step toward improving the lives of those living with rare diseases.
Future Outlook
AOP Health’s efforts to enhance patient engagement and collaboration are like planting seeds in a garden; the results may not be immediate, but they are essential for long-term growth. The company’s focus on generating and sharing scarce data, conducting clinical studies, and releasing patient-friendly information is laying the groundwork for more effective treatments and better patient outcomes. To coincide with Rare Disease Day 2026, AOP Health will release a special podcast episode and a Rare Disease Day special on its website from February 26 to March 2, 2026.
Conclusion
AOP Health’s commitment to collaboration and patient-centered information is a significant step forward in the fight against rare diseases. By working closely with healthcare professionals, researchers, and patient organizations, the company is addressing the critical knowledge gaps that hinder progress. This approach not only aligns with new EU regulations but also ensures that the needs and experiences of patients are at the forefront of research and treatment. Join the conversation in the comments below.
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.
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