Rare Disease Day is celebrated across the world annually on the last day of February with the goals of raising public awareness and calling attention to the challenges that rare disease patients face. Rare Disease Day 2018 was a success thanks to the tremendous work of stakeholders, particularly patient organizations who led many of the coordination efforts in their respective countries. EURORDIS-Rare Diseases Europe reported that 465 events took place in 92 countries including – for the first time – Togo, Ghana, Trinidad and Tobago, Cape Verde and The Syrian Arab Republic. Diverse events were organized, including symposia, sports events, awareness walks and flash mobs. (To find out more about the international Rare Disease Day events, follow this link.)
Several IRDiRC members hosted successful events. In Australia, Rare Voices Australia (RVA), the Western Australian Health Translation Network (WAHTN), and the Western Australian Register of Developmental Anomalies (WARDA) organized the Rare Disease Day Symposium 2018. In Europe, EURORDIS-Rare Diseases Europe created a commemorative video that has been translated into over 30 languages. Additionally, EURORDIS-Rare Diseases Europe, together with the Italian National Alliance for Rare Diseases (UNIAMO) and MEP Elena Gentile, also organized the ‘Rare Lives’ exhibition at the European Parliament. In Africa, Rare Diseases South Africa (RDSA) sold denim ribbons to fundraise in support of Rare Disease Day. Across the Atlantic in the US, the National Center for Advancing Translational Sciences (NCATS) and the National Institutes of Health (NIH) Clinical Center organized an event that included presentations, posters, exhibits, an art show, videos, and tours of the NIH Clinical Center.
Accompanying Rare Disease Day, the National Organization for Rare Disorders (NORD) announced a collaboration with the Food and Drug Administration (FDA) on a pilot projectthat would help FDA medical reviewers better understanding patient experiences with rare diseases. Importantly, the World Health Organization confirmed in a statement its engagement to “support countries on the path towards universal health coverage, with the aim of ensuring that all people can access the health services they need, when and where they need them, without facing financial hardship. This includes access to diagnosis and treatment for people who suffer from rare diseases”.