Company intelligence
EURORDIS-Rare Diseases Europe
Working across borders and diseases to improve the lives of all people living with rare diseases.
About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease patient organisations from more than 70 countries that work together to improve the lives of all people living with rare diseases in Europe. By connecting and mobilising all stakeholders from within and outside the rare disease community, EURORDIS strengthens the voice of people living with rare diseases and shapes research, policies and services. Our vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no-one behind. To achieve their full potential, people living with a rare disease need to be: - recognised as equal citizens with their rights fully respected - diagnosed timely and accurately - supported by state-of-the-art medical and social care, or cured - included in society in all aspects of life and enabled to live independently Our mission is to work across borders and diseases to improve the lives of all people living with rare diseases.
Verified activity
Signals from EURORDIS-Rare Diseases Europe
8 published signals
People
EURORDIS-Rare Diseases Europe mourns the passing of François Faurisson, a former colleague and valued member of the EURORDIS community.
Reported by EURORDIS-Rare Diseases Europe
People
EURORDIS-Rare Diseases Europe is opening applications for the Open Academy x ERDERA Mentoring Programme, which is exclusively for alumni who have completed one of the Open Academy Schools.
Reported by EURORDIS-Rare Diseases Europe
Presence & Recognition
EURORDIS-Rare Diseases Europe is hosting the Osteogenesis Imperfecta Federation Europe (OIFE) Clinical Trial Update 2026 webinar on 13 October 2026 at 20:00–21:30 CET.
Reported by EURORDIS-Rare Diseases Europe
Presence & Recognition
EURORDIS-Rare Diseases Europe hosted the 10 Minutes With: Youth Leadership episode on 17 September
Reported by EURORDIS-Rare Diseases Europe
Research & Knowledge
EURORDIS-Rare Diseases Europe published Rare Barometer, a research tool capturing the realities and experiences of people living with rare diseases across diagnosis, treatment, and care.
Reported by EURORDIS-Rare Diseases Europe
Research & Knowledge
EURORDIS-Rare Diseases Europe established the ePAG Transversal Working Group on Research and Registries to develop patient advocates' understanding of ERN clinical and basic research topics.
Reported by EURORDIS-Rare Diseases Europe
Research & Knowledge
EURORDIS-Rare Diseases Europe established the EURORDIS Round Table of Companies to create a space for pharmaceutical and biotech companies to engage with the rare disease community and collaborate on research, development, and access to treatments.
Reported by EURORDIS-Rare Diseases Europe
Presence & Recognition
EURORDIS-Rare Diseases Europe announced that applications for the 2027 EURORDIS Open Academy x ERDERA Schools are now open.
Reported by EURORDIS-Rare Diseases Europe