On 29 February, patients around the world will celebrate the ninth annual Rare Disease Day. People living with a rare disease and their families, patient organisations, politicians, carers, medical professionals, researchers and industry come together in solidarity to raise awareness of rare diseases.
A patient-led campaign, organisations in over 80 countries and regions are participating in Rare Disease Day 2016 by holding their own local events. This year also sees Uganda and Indonesia participate for the first time, as well as the launch of a new version of RareDiseaseDay.org. The Rare Disease Day 2016 poster features Yuliya, who is living with type 2 spinal muscular atrophy.
Yann Le Cam, Chief Executive Officer of EURORDIS, the European Organisation for Rare Diseases, said, "This RDD we are celebrating the Patient Voice. Every person living with a rare disease and their families can tell a story of the journey of resilience they travel in trying to navigate a diagnostic maze and to access care and treatment."
He added, "Rare disease patients around the world work strenuously to ensure their voice is heard and that they bring about the change needed to improve their lives. We are moving from isolation and despair to a critical mass of citizens that bring a strong voice and hope through positive actions. The momentum for Rare Disease Day is truly global and growing!"