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"Jack My little warrior", living with Sotos Syndrome, by Rachel Hughes

It takes an average of 5 years for rare disease patients to get a diagnosis.

95% of rare diseases have no approved treatments.

EURORDIS is working to change these realities.

“Jack, My Little Warrior”, living with Sotos Syndrome, by Rachel Hughes

Amplifying the patient voice with each and every donation

Become a Rare Champion today!



EURORDIS is committed to a “Patients and People First” approach to shaping policies important to the rare disease community. Your support helps ensure we amplify the patient voice on the world policy stage, including at European Parliament, the World Health Organization, and the United Nations, including through the global Rare Disease Day campaign.


One of EURORDIS’ most powerful roles is tackling isolation opportunities for people living with a rare disease to take action and make a difference. Your support makes possible programmes like EURORDIS’ Open Academy, which empowers and trains patient advocates.


In order for rare disease advocates to make a meaningful difference, they must have opportunities to partner with other stakeholders in shaping priorities and finding solutions. Your support ensures that our team of expert volunteers can join the conversation in all of the European arenas where progress is happening.