Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. NORD is thrilled to celebrate the 5th US Rare Disease Day this year! The concept has continued to expand beyond the US and Europe. In 2012, more than 60 countries participated and, through social media, the awareness and participation has had an even broader reach.
Each year, Rare Disease Day is observed on the last day of February (Feb. 29 in leap years and Feb. 28 in other years). The goal is to draw attention to rare diseases as an important public health issue that cannot be ignored.
To learn more about the global initiatives supported through rare disease day, please visit www.rarediseaseday.org.
NORD/EURORDIS Strategic Partnership
In May of 2009, NORD and EURORDIS entered into a strategic partnership to catalyze transatlantic collaboration. The goal is to support policies and practices that promote innovative research and the development of new treatments, provide access to the highest standard of diagnosis and care, encourage more patient-centered health care systems, offer a higher quality of information, and help break the isolation of the people living with rare diseases.
Through the partnership, patient advocates in Europe and the US are working together closely. Key initiatives include an international public policy advocacy blog, online rare disease patient communities (RareConnect) and Rare Disease Day.