Patient empowerment & Training

EURORDIS’ training programmes and resources are designed to strengthen the capacity of rare disease patients’ representatives. Training helps empower patients’ representatives to advocate effectively for rare diseases at both the local and EU level.

 

EURORDIS Open Academy

The EURORDIS Open Academy brings together all EURORDIS trainings with the goal of building the capacity of rare disease patient advocates.

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Online Learning

The EURORDIS Online learning course provides a fun, easy-to-use tool for learning more about clinical trials: methodology, ethics, statistics

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EUPATI

As a partner in the European Patients' Academy on Therapeutic Innovation, EURORDIS is developing educational content on medicine risk/benefit assessment

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EURORDIS Policy Fact Sheets

The EURORDIS Policy Fact Sheets provide an easy-to-use informational tool that facilitates participation in developing national and European policies

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases