Rare Disease Day
Rare Disease Day 2025
On February 28th, the world comes together to observe Rare Disease Day, a global initiative dedicated to raising awareness for the approximately 300 million people worldwide living with rare diseases. Among these, children are the most affected, with 70% of patients being minors who often face challenges in receiving a timely and accurate diagnosis. Utilizing advanced technologies like Neo4j Knowledge Graphs and Artificial Intelligence (AI) to help identify and diagnose rare conditions faster and more accurately are some of the many examples of innovative work at the Dr. von Hauner Children's Hospital.
On Rare Disease Day, we stand together to honor those affected and to highlight the ongoing efforts to make a difference through modern medical technologies and research. The CCRC contributed with various initiatives to raise awareness and to generate change for the 300 million people living with rare diseases:
Insight into research on social media
Christoph Klein: Seltene Erkrankungen, Gentherapien, Kinderwürde, Ethik | Lehmann Podcast
Are you interested in learning more about rare diseases? Follow this link to Prof. Klein's interview in the Lehmann Podcast about rare diseases, gene therapy, children's dignity and ethics!
“Let us not forget the most vulnerable”: A Conversation with Prof. Christoph Klein
A LinkedIn-Post of the European Children's Hospitals Organisation (ECHO) on Rare-Disease-Day
🦓 Rare disease day is 28 February 2025
🔦ECHO is shining a light on our members and how they work to improve the lives of children and families with rare diseases
The Numbers:
🌍 300M+ people affected by 8,000+ rare diseases globally
🧒🏿 75% of rare diseases appear in childhood
🧬 70% of rare diseases are genetic
🏥 Dr. von Hauner Children's Hospital LMU Klinikum München, in collaboration with the ECHO network, is paving the way for European-funded research and public-private partnerships. They are actively preparing an application for the Innovative Health Initiative (IHI) to advance research projects through public-private partnerships. Cross-border cooperation is key to pooling knowledge and accelerating progress.
🔬 New technologies offer hope: Federated machine learning & AI promise faster, more precise diagnoses and personalized therapies — all with robust data protection.
✨ Children with rare diseases are not only an inspiration for researchers, but also pioneers of future medical innovation.
🤝By working together, we can turn hope into tangible solutions.
Published articles about the AMIGO project on the occasion of rare disease day
Further information and how you can become active can be found here:
Care-for-Rare-Foundation: Foundation for children with rare diseases
The Care-for-Rare Foundation is committed to giving children with rare diseases worldwide access to diagnosis, treatment and research. It promotes innovative projects, supports affected families and connects scientists in order to better understand and treat rare diseases.
Care-for-Rare Foundation for children with rare diseases - Help us to help the orphans of medicine!
Rare Disease Day - Global initiative for and by people with rare diseases
Rare Disease Day raises awareness of the challenges faced by people with rare diseases worldwide and campaigns for better research, diagnosis and care. The initiative brings together those affected, relatives, organizations and experts to raise awareness and initiate political change.