Rare Disease Day (RDD) is observed on the last day of February each year with purpose of spreading awareness of the ramifications faced by those who live and work with the approximately 7000 rare diseases now recognized. To find out more obout RDD visit rarediseaseday.org.
Each year we focus on an area needing awareness in rare diseases and 2019 theme is Bridging health and social care.
In 2008, European Organisation for Rare Diseases (EURORDIS) helped launch Rare Disease Day in Europe and this campaign was quickly supported in 2009 by National Organization for Rare Disorders (NORD) as they catalyzed over 200 patient advocacy organizations to commemorate this day in the US. This initiative became a global effort as many other countries developed strategies to increase rare disease awareness.
Combined, more than 30 Million adults and children in the United States (about 10% of the population) are affected by a rare disease. Review State Progress Report by National Organization for Rare Disorders (NORD) to find out how individual state;s are involved in improving care for rare disease patients.
Global Genes concentrates part of their efforts on creating opportunities for everyone to get involved in promoting awareness of rare diseases.
