The National Organization for Rare Disorders (NORD) is coordinating the observance of Rare Disease Day in the United States on February 28, 2009. On that day—and in the weeks leading up to it—we will join with others around the world to conduct a variety of activities to raise awareness of rare diseases and the need for safe, effective treatments.

We invite all patient organizations, companies, medical societies, government agencies, and others with an interest in rare diseases and orphan products to join us in this global effort. You can do this by writing to This e-mail address is being protected from spambots. You need JavaScript enabled to view it and signing up as a Rare Disease Day Partner.

This will be the 2nd Annual Rare Disease Day. The special day was observed for the first time last year in Europe and was coordinated by NORD's partner organization, EURORDIS. It is the hope of NORD and EURORDIS that this will become an annual global event, taking place on the last day of February each year.

NORD will provide a press kit and other materials to all Rare Disease Day partners, along with a Rare Disease Day logo to display on their websites. The partners will be encouraged to come up with their own creative initiatives within the spirit and stated goals of Rare Disease Day.

You are being invited to:

• Become a Rare Disease Day Partner by writing to This e-mail address is being protected from spambots. You need JavaScript enabled to view it
• Display the Rare Disease Day logo on your website
• Link to the global Rare Disease Day website (to be launched very soon)
• Ask the governor of your state to declare Feb. 28, 2009, Rare Disease Day in the state
  Personalize the Rare Disease Day press kit NORD will provide and share it with your media contacts
• Nominate researchers to the Rare Disease Hall of Fame to be posted on NORD's website
• Share information with NORD about your Rare Disease Day activities so that NORD can tell other Rare Disease Day Partners about what you are doing
• Share human interest stories for posting on the NORD website or in the press kit
• Create blogs for online communities and/or videos for YouTube to be posted during the week leading up to February 28, 2009

Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892–7518
Telephone: (301) 402–4336
Fax: (301) 480–9655

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