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About Rare Disease Day®

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.  It’s never too early to get involved!

The National Organization for Rare Disorders (NORD) is the official Sponsor of Rare Disease Day in the United States alongside our sister organization, EURORDIS (The European Organization for Rare Disorders), which organizes the official international campaign.  Over 80 countries participated in Rare Disease Day 2015.  To learn what’s happening around the world, visit the global Rare Disease Day website at rarediseaseday.org.

Anyone can get involved in Rare Disease Day awareness.  On this site, U.S. participants can find, suggest and get involved in events taking place across the country.  We also have suggested activities for those who are new.

2016 Recap

 

History of Rare Disease Day

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 8th US Rare Disease Day this year! The concept has continued to expand beyond the US and Europe. In 2015, all five continents and 80+ countries participated.  Through social media, we have achieved even more awareness and participation.

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 rarediseaseday.org.

NORD/EURORDIS Strategic Partnership

In May of 2009, NORD and EURORDIS entered into a strategic partnership to further improve 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 online rare disease patient communities (RareConnect), Rare Diseases International (RDI), and Rare Disease Day.