Join Us In Observing Rare Disease Day On Feb. 28, 2009!
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.
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.