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Figure 1. EURORDIS achievements.

Every two years, the EURORDIS Membership Meeting (EMM) provides an opportunity for all EURORDIS
members to network with researchers, healthcare professionals, academia, and healthcare industry
[24]
representatives to learn from each other and improve the quality of care of PLWRD .
Another impactful initiative is the Rare Disease Day campaign launched in 2008. This global awareness
campaign takes place annually on the last day of February to raise public understanding of rare diseases, and
advocate for better support and research for PLWRD. Through Rare Disease Day, EURORDIS successfully
engages millions of people worldwide, with thousands of events organised every year in over 100 countries
across the world. This global movement fosters a sense of unity among the rare disease community and
provides a critical focal point through which patient organisations can capture the imagination of runway at
[25]
the national and local levels for PLWRD .

Since 2017, EURORDIS has established the Network of Parliamentary Advocates for Rare Diseases. This
[26]
initiative helps to elevate the patient perspective in new legislation and EU public policy .
PARTNERING WITH THE RD COMMUNITY
EURORDIS is instrumental in not only voicing patients’ concerns and priorities but also supporting and
engaging them as actors and equal partners. By establishing and facilitating networks with strategic partners
and key stakeholders, the organisation has contributed to advances in diagnostic care pathways, research,
holistic care, patient engagement, and therapy development, among other areas. The outcomes have been