Today is Rare Disease Day 2019, aiming to raise awareness amongst the general public as well as decision-makers for rare diseases and how they affect patients' lives.
A rare disease affects, per definition, less than 1 of 2,000 people. But in total this is a lot: More than 8,000 rare diseases are known up to date, meaning every 17th person is affected by a rare disease - in Austria these are about 400,000 people . These numbers show the impact of rare diseases on the health system and people's lives in general.
We, as a research institute focusing on rare diseases, want to emphasize the importance of research to identify the underlying molecular mechanisms, early diagnosis of rare diseases, and targeted therapies. A key factor is a network of physicians, patient organizations, and affected patients, to be able to diagnose a rare disease as fast as possible, find similar patient cases around the world, and start the correct therapy without losing precious time.
The CeRUD - Vienna Center for Rare and Undiagnosed Diseases, has been established with the goal to pool competences and resources to help affected patients with an interdisciplinary approach to ensure the best possible diagnosis and care.
The LBI-RUD will also be present at the Rare Disease Dayevent on 2nd March, organized by Pro Rare Austria at the "Museumsquartier" in Vienna. We kindly invite you to join this event and learn more about rare diseases and how our research contributes to the field and to the improvement of affected patients. (https://www.prorare-austria.org/newsroom/veranstaltungen/event/der-pro-r...)