The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for...
The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:
1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;
2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;
3. To build capacities and empower rare disease patients advocates, members and volunteers;
4. To sustain human, financial and organisational resources.
EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU.
Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.