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Rare Disease Resources

  • ​A national awareness and recognition of the challenges endured by people living with rare diseases;

  • A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;

  • Access for all patients to the diagnostics and therapies that will extend and improve their lives.

  • A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 761 rare disease patient organisations from 68 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.

Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAnumber), essential in improving the visibility of rare diseases in health and research information systems.

Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997.This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.

Orphanet: an online rare disease and orphan drug data base. Copyright, INSERM 1997.

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