Four in Five Austrians Call for More Awareness
Rare diseases are an issue of concern for people across Austria. Yet when it comes to reliable information and points of contact, many struggle to find their way. A majority of respondents (59 percent) view rare diseases as an important societal challenge.
By contrast, only one in four believe that awareness of rare diseases in Austria is sufficient or consider themselves well informed. As a result, the demand for information and practical support remains high. Reliable sources, including websites and educational materials, are often difficult to find. This makes professional awareness initiatives even more important: 82 percent consider information provided by experts to be highly valuable, while only 39 percent believe sufficient information is readily accessible.
The call for greater awareness is therefore clear. It is no longer just about visibility, but also about providing guidance that is understandable, trustworthy and available when people need answers.
Gen Z Leads the Way: Younger People Show Greater Awareness
Clear differences emerge across generations. Younger people are more likely to encounter rare diseases within their personal networks and engage more actively with the topic, while rare diseases tend to be less visible among older generations. 72 percent of Millennials and nearly 66 percent of Gen Z respondents say they know what rare diseases are, while almost 62 percent of Millennials and 64 percent of Gen Z can name a specific condition. Nearly one in two reports a personal connection to the topic or knows someone affected.
Among Baby Boomers, the picture is almost the opposite. Only 35 percent can name a rare disease. Just 21 percent consider the topic personally relevant, and about 30 percent know someone living with a rare disease.
Differences are also evident in information-seeking behavior. Around 70 percent of Gen Z respondents and Millennials research symptoms online before consulting a doctor, compared with only 40 percent of Baby Boomers. This underlines the importance of reliable digital information, particularly for complex conditions that do not have a standard diagnostic pathway.
Supporting People with Rare Diseases for 30 Years
For three decades, AOP Health has been committed to improving the lives of people living with rare diseases. In addition to research and therapy development, the company places strong emphasis on continuous dialogue with medical experts, healthcare professionals and patient organizations.
“From the very beginning, our ambition has been to take responsibility where unmet medical needs are greatest and where the journey for patients is particularly challenging, together with our partners across healthcare,” says Dr. Rudolf Widmann, Founder and Board Member of AOP Health. “Thirty years later, this commitment remains unchanged. We strive to create new perspectives through innovation, meaningful partnerships and a deeper understanding of the realities people living with rare diseases face every day.“
