ABOUT EURORDIS
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing over 1,000 rare disease patient organisations in 74 countries. We are the voice of 30 million people affected by rare diseases throughout Europe.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. LEARN MORE ABOUT EURORDIS
EURORDIS PROGRAMMES
EURORDIS BLACK PEARL AWARDS
Don't miss your chance to NOMINATE YOUR STAR OF THE RARE DISEASE COMMUNITY, or enter yourself, for one of the next EURORDIS Black Pearl Awards.
The 13 award categories recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe and 300 million worldwide living with a rare disease.
Nominations can be submitted from anywhere in the world!
Among all the nominations received, the EURORDIS Board of Directors will select the awardees in October 2023. The awardees will then be presented with their awards at the official Ceremony in February 2024, to mark the occasion of Rare Disease Day.
Any questions regarding the nomination process? Do not hesitate to contact Martina Bergna, EURORDIS Events Manager, at martina.bergna@eurordis.org.
EURORDIS Black Pearl 2023 Awardees
OPEN ACADEMY
EURORDIS' training programmes
Become a patient advocate through the EURORDIS Open Academy capacity building programmes in medicines development, scientific innovation and research.
FUTURE OF EURORDIS' TRAINING
Help us shape the future of training at EURORDIS by taking our survey
Deadline to respond: 31 May.
Open to all rare disease patient advocates and researchers from any age and any country, not limited to Europe!
RARE BAROMETER
EURORDIS' survey programme - Make your voice heard!
Rare Barometer is a EURORDIS survey programme created to systematically collect patient opinions on transversal topics and include them in the policy and decision-making process. Rare Barometer brings together more than 20,000 patients, carers and family members to make the voice of the rare disease community stronger!
Rare Barometer surveys and results are available in more than 20 languages!
LEARN MORE & SURVEY RESULTS
EURORDIS Round Table of Companies
The EURORDIS Round Table of Companies (ERTC) fosters a long-term, educational relationship and and a constructive dialogue between EURORDIS and companies addressing rare diseases.
Rare on Air
Tune into our new monthly podcast to hear from people who live with a rare disease, those who advocate for them, and experts on rare disease policy.