Rare Disease Day is observed every year on February 28th. It is a day for global action, raising awareness and rallying support through events like the Rare Disease Run in Karlsruhe.
The Significance of Rare Disease Day
2026 marks the 19th anniversary of this international day of action. Launched in 2008 by EURORDIS (an alliance of European patient organizations), the event shines a light on the daily lives and challenges of those living with rare conditions.
What Defines a Rare Disease?
In the European Union, a disease is classified as rare if it affects fewer than 5 in 10,000 people. With over 6,000 known rare diseases, many are chronic and involve multiple organ systems, presenting families with significant medical, social, and emotional hurdles.
Rare Disease Run – Show Your Support on Foot or on Wheels
For the past five years, this event has brought people together in support of the cause. The goal is to make patient advocacy groups more visible while raising vital funds for research and care. Every year, both the number of participants and the total donations continue to reach new heights.
This year, Axel Lankenau from the PCH-Familie e.V. association participated alongside his sons, Jonas and Felix, both of whom live with PCH2. They were joined by Simone Mayer and her research group from the Karlsruhe Institute of Technology (KIT). Professor Mayer and her team utilize brain organoids to decode the underlying mechanisms of PCH. Alongside Axel Lankenau and many others, she is a key part of the PCH2cure project, which is driven by the ambitious goal of developing a therapy for PCH2 by 2030.
Beyond the laboratory, events like the Rare Disease Run offer a vital space for connection. These shared experiences bridge the gap between researchers and families, fueling scientific progress and therapy development through donations, and highlighting the positive impact of collective action.
