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EURORDIS - Rare Diseases Europe. We advocate for, empower and engage people living with a rare disease in Europe.
EURORDIS (Rare Diseases Europe) is a non-profit alliance of over 900 rare disease patient organizations from more than 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families, and patient groups, as well as by bringing together all stakeholders and mobilizing the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and patient services.
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Website Key Features
Rare Disease Day
An annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients.
Policy Advocacy
EURORDIS actively engages in policy-making processes at the European level to ensure that the needs of rare disease patients are considered in health policies.
Research and Innovation
Supports and promotes research in the field of rare diseases, including funding research projects and facilitating collaboration among researchers.
Patient Support
Provides resources and support to rare disease patients and their families, including information on diseases, treatment options, and patient rights.
European Reference Networks
Facilitates the establishment of European Reference Networks (ERNs) for rare diseases, which are virtual networks involving healthcare providers across Europe.
Training and Empowerment
Offers training programs and workshops to empower rare disease patients and patient advocates with knowledge and skills.
International Collaboration
Works with international organizations and networks to promote global awareness and action on rare diseases.
EURORDIS Open Academy
A comprehensive training program designed to build the capacity of rare disease patient advocates in research, drug development, and healthcare.
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Additional information
Membership
EURORDIS membership is open to all rare disease patient organizations that share its vision and objectives. Members benefit from networking opportunities, resources, and support.
Events
EURORDIS organizes and participates in numerous events throughout the year, including conferences, workshops, and Rare Disease Day activities.
Publications
Produces a wide range of publications, including reports, newsletters, and position papers, to inform and advocate for the rare disease community.
Awards
Recognizes outstanding contributions to the rare disease community through various awards, including the Black Pearl Awards.
Volunteering
EURORDIS offers opportunities for individuals to volunteer and contribute to its mission through various roles and activities.
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