EURORDIS seeks to improve the quality of life of people living with rare diseases in Europe through advocacy at the European level, support for research and medicines development, facilitating networking amongst patient groups, raising awareness, and many other actions designed to reduce the impact of rare diseases on the lives of patients and family.
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 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 mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
EURORDIS supports the creation and development of rare disease national alliances and disease-specific European federations and networks.
EURORDIS is supported by its members and by the AFM - Téléthon, the European Commission, corporate foundations and the health industry. EURORDIS was founded in 1997.
Vision and Mission:
Their vision is to enable better lives and cures for people living with a rare disease.
Their mission is to work across borders and diseases to improve the lives of people living with a rare disease
To this end, EURORDIS undertakes activities on behalf of its members, notably in favour of:
-Empowering rare disease patient groups
-Advocating rare diseases as a public health issue
-Raising public rare disease awareness, and also that of national and international institutions
-Improving access to information, treatment, care, and support for people living with rare diseases
-Encouraging good practices in relation to these
-Promoting scientific and clinical rare disease research
-Developing rare disease treatments and orphan drugs
-Improving quality of life through patient support, social, welfare and educational services
EURORDIS represents 30 million patients affected by over 5000 distinct rare diseases and advocates within the European Commission and other European institutions for policies that address the needs of patients and their families.
EURORDIS is active in promoting health policies and services that bring solutions to people living with rare diseases.
EURORDIS advocates for policies that promote the development and equitable distribution of rare disease medicinal products and also initiates and participates in many activities.
EURORDIS actively contributes to rare disease research policy development and is a partner in many initiatives and projects.
EURORDIS’ training programmes and resources are designed to strengthen the capacity of rare disease patients’ representatives.
EURORDIS encourages rare disease patients and organisations to share information, experience and resources.
Where is European Organisation for Rare Diseases - EURORDIS