Disease Information from NORD, National Organization for Rare Disorders, Inc.

Join Us In Observing Rare Disease Day On Feb. 28, 2009!

Rare Disease Day To raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 2nd Annual Rare Disease Day on the last day of February (Feb. 28, 2009). NORD is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments.

The 1st Rare Disease Day was organized in Europe last year by EURORDIS, the European Rare Disease Organization. It was very successful, with many political leaders and members of royal families helping to draw attention to the activities. This year is the first time for Rare Disease Day to be observed in the U.S. The hope is that this will become an annual global event on the last day of February.

Michigan Governor Issues RDD Proclamation

Governor Jennifer Granholm of Michigan has proclaimed that February 28, 2009, will be Rare Disease Day in that state. Her proclamation was issued in response to a request by Stephanie Hunt, a NORD member who also represents the Rubinstein-Taybi Support Group. Stephanie, a former Mrs. Michigan, went on to become Mrs. United States for 2007. If you would like to write to your governor about Rare Disease Day, see the sample letter below.

Other Proclamations
As of today, NORD has received proclamations from the governors of Connecticut, Kentucky, Montana and Nebraska, in addition to Michigan, related to Rare Disease Day. View map.

Rare Disease Day Partners

List of Partners to date

The Office of Rare Diseases (ORD) at the National Institutes of Health (NIH) and the Office of Orphan Products Development (OOPD) at the U.S. Food and Drug Administration (FDA) have signed on as Rare Disease Day Partners.

In addition, all organizations, societies, and companies working with rare diseases and/or orphan products are invited to become Rare Disease Day Partners. (For information on this, write to rarediseaseday@rarediseases.org). Partners are also being asked to:

* Write to their state governors requesting that February 28, 2009, be designated Rare Disease Day in their state. Click here to download a sample letter and sample resolution.

* Post the Rare Disease Day logo on their websites and in their publications.

* Make their members aware of Rare Disease Day. Sample Newsletter Story

* Encourage media coverage of Rare Disease Day by suggesting stories to their media contacts for that day or the week leading up to it. (NORD will provide a press kit soon to all partners that can be personalized and used as needed.)

* Share information about any activities their group may sponsor related to Rare Disease Day so that other organizations can benefit from reading about what they are doing.

* Share human interest stories about individuals and families affected by rare diseases to rarediseaseday@rarediseases.org, for possible posting on this website or for possible use by reporters covering Rare Disease Day.

* Nominate researchers to a Rare Disease Hall of Fame to be published on the website. This can be done by sending a brief (one page or less) summary of the what the researcher is doing, why it is important, and any results to date that have improved the lives of people with rare diseases. If possible, nominations should include a photo of the researcher.

Watch for More Information Soon

NORD will be posting new information regularly on this page and in emails to Partners. Return to this page often and, if you have questions or would like to share information related to Rare Disease Day, write to rarediseaseday@rarediseases.org.