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Our Strategy & Impact

EURORDIS Strategy 2021 – 2030

After conducting a strategic review, EURORDIS made public its 2021 – 2030 strategy that was adopted by the members at the 2021 EURORDIS General Assembly.

Strategic objectives 2021 – 2030

1 – A new European policy framework to achieve measurable goals prolonging and improving the life of persons living with rare diseases

By 2030, EURORDIS has promoted and facilitated the implementation of a new European policy framework to achieve measurable goals prolonging and improving the life of persons living with rare diseases and their inclusion in society, while designing a European model of care driven by aneed’s led- innovation and collective responsibility prioritising solidarity and equity.

2 – An ecosystem of networks of member organisations, organisations at large and partners to achieve better and faster results

By 2030, EURORDIS has redefined and focused its unique role in the rare disease ecosystem; is leading impactful and motivated networks of member organisations and advocates across diseases and borders, enabling to relay people’s needs and integrate European with national actions in key policy areas; and as a driver of change, is creating synergies across partners and key stakeholders to achieve better and faster results.

3 – Focusing on priority areas where it matters most during next decade to achieve the goals

By 2030, EURORDIS has regularly assessed and consolidated its priority areas of operations to both respond to the demands of organisations and advocates while aligning with internal capacity, progressively focusing on the new challenges of data and health digital technologies as well as on holistic life-long approach and inclusion in society; as much as to strengthen its priority on changing the game in research and knowledge, early diagnostic, development of and access to transformative or curative therapies, integrated care, national and European healthcare pathways and cross-border healthcare.

4 – Inclusive of all rare diseases, all regions, to “Leave no one behind”

By 2030, EURORDIS has achieved a “leave no one behind” strategy inclusive of genetic and non-genetic rare diseases – rare cancers, rare infections and rare poisonings – putting more focus on Eastern and Southern Europe, changing the game on very rare diseases and promoting the next generation of young advocates.