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EURORDIS is a unique, non ‐ profit alliance of 792 rare disease patient organisations from 69 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.
Key tasks & responsibilities
The Research & Policy Project Manager (RPPM) is responsible for the support of EURORDIS’ involvement in Research Projects comprising activities related to rare disease research, diagnostics, infrastructures and technologies as well as related ethical issues. The RPPM will work closely with the Scientific Director, Therapeutic Development Director, ERN & Healthcare Director, Patient Engagement Senior Manager and other team members to develop the healthcare and research networks and infrastructure to meet the needs of the rare disease community.Find out more – eurordis.org