Due to the high number of enquiries, responses typically take up to a week.

The theme for this Rare Disease Day, "More Than You Can Imagine," highlights the unseen challenges of living with a rare disease and the need for fair access to healthcare, support, and research. It aims to raise awareness, advocate for better policies, and ensure that all people living with a rare disease receive the care they deserve.

In the main menu under Resources.

Unfortunately, we are unable to provide financial support or medical advice. We encourage you to contact a patient organisation in your country for assistance. If no national organisation is available, disease-specific organisations may offer guidance or connect you with others facing similar challenges. For medical concerns, we strongly recommend consulting a doctor. Patient organisations may also help provide reliable medical information.

You can check our 'Friends' list of partner organisations, visit the website of a national alliance in your country, or explore EURORDIS and RDI members for connections and support.