Skip to content
Generic selectors
Exact matches only
Search in title
Search in content
Post Type Selectors

Who we are

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.

By connecting patient, 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.

Our vision and mission

EURORDIS’ vision is a world where all people living with a rare disease can have longer and better lives and can achieve their full potential, in a society that values their well-being and leaves no one behind.

To achieve their full potential, people living with a rare disease need to be:
– Recognised as equal citizens with their rights fully respected
– Diagnosed timely and accurately
– Supported with state-of-the-art medical and social care, or cured
– Included in society in all aspects of life and enabled to live independently.

Our mission is to work across borders and diseases to improve the lives of all people living with rare diseases

Advocate

To advocate for policies and innovative solutions driven by the needs of people living with rare diseases.

Empower

To empower organisations and advocates representing people living with rare diseases across all rare diseases and all European countries, by equipping them with the knowledge and skills they need to fight for better lives.

Partner

To establish and facilitate networks with strategic partners and key stakeholders, including, but not limited to, policy makers who support active and meaningful engagement with people living with rare diseases.

Our Strategy & Impact

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 lives of people living with rare diseases by 2030

By 2030, EURORDIS will have promoted and facilitated the implementation of a new long-term European policy framework based on the Foresight Study “Rare 2030”, guaranteeing that rare diseases are a sustainable public health priority and integrating European policies and national strategies across all countries in Europe, to achieve measurable goals improving the health & well-being of people living with rare diseases and their inclusion in society, as well as reducing inequalities across Europe.

By 2030, within the UN Sustainable Development Goals Agenda 2030, the One Sustainable Health Approach and the future European Health Union, we will have designed a European model of care, transformative and useful beyond rare diseases. This innovative model will be driven by the needs of people living with a rare disease and a collective responsibility to prioritise solidarity and equity.

2 – Delivering on 6 priority areas

By 2030, EURORDIS will have made contributions to the goals of (Based on the Foresight Study Rare 2030): 

  • Earlier, faster and more accurate diagnosis – the goal of diagnosis within 6 months 
  • High-quality national and European healthcare pathways, including cross-border healthcare – a goal of improving survival by 3 years on average over 10 years and reducing the mortality of children under 5 years of age by one third
  • Integrated medical and social care with a holistic life-long approach and inclusion in society – a goal of reducing the social, psychological and economic burden by one third 
  • Research and knowledge development that is innovative and led by the needs of people living with a rare disease
  • Optimised data and health digital technologies for the benefit of people living with a rare disease and society at large
  • Development and availability, accessibility, and affordability of treatments, particularly transformative or curative therapies – a goal of 1000 new therapies within 10 years

3 – Inclusive of all rare diseases, all regions, “Leaving no one behind”

By 2030, EURORDIS has expanded its scope to “leave no one behind” in the rare disease community by covering:

  • All therapeutic areas including genetic and non-genetic rare diseases – rare cancers, rare infections and rare health hazards 
  • All 48 countries in Geographical Europe prioritising Eastern and Southern Members of the EU, European Economic Area & EU Accessing Countries 
  • All rare disease prevalence and incidence levels, particularly the ones affecting fewer than 1 in 1 000 000