NORD's
Washington Office
 Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Newsletter
Global Rare Disease Day Set for Feb. 28th
(Name of your organization) will participate in a global Rare Disease Day
on February 28th, 2009. As a Rare Disease Day Partner, we will join hundreds of
other patient organizations, government agencies, medical societies and
companies in focusing attention on rare diseases on that day.
This will be the Second Annual Rare Disease Day. The first was observed in
Europe last year and was organized by EURORDIS, the European Rare Disease
Organization, and the national alliances of rare disease patient organizations
in each country.
This year, EURORDIS invited NORD, the National Organization for Rare Disorders,
to organize a similar observance in the United States. Activities are also being
planned in some other countries. The ultimate goal is to have a global Rare
Disease Day on the last day of February each year.
The theme is that rare diseases are a public health issue, affecting millions of
people around the world. The hope is that Rare Disease Day will increase
awareness of rare diseases, the special challenges encountered by those
affected, and the need for research to develop safe, effective treatments or
cures.
As a Rare Disease Day Partner, our organization has agreed to help publicize and
promote Rare Disease Day. Partners are invited to post the Rare Disease Day logo
on their websites.
Also, Partners and their members are encouraged to work with their media
contacts, post videos and messages online, share human interest patient stories,
and nominate researchers to a Rare Disease Hall of Fame. Pins and bracelets with
the Rare Disease Day logo will be available soon at cost to the members of
Partner organizations.
In addition, all Partners and their members have been invited to write to their
state governors to request that Feb. 28, 2009, be designated Rare Disease Day in
the state. (A sample letter and resolution are posted on the NORD Rare Disease
Day web page.)
Watch our website, or the following sites, for more information on these and
other activities:
U.S. Rare Disease Day page on the NORD website:
http://www.rarediseases.org/rare_disease_day/rare_disease_day_info
Global Rare Disease Day website:
www.rarediseaseday.org.
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