Rare Disease Day at NIH (RDD@NIH)
On February 28, and March 1, 2013, the National Institutes of Health (NIH) will
celebrate the sixth annual Rare Disease Day with a 2-day-long celebration and
recognition of the various rare diseases research activities supported by the
NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH
Institutes and Centers; the Food and Drug Administration’s Office of Orphan
Product Development; other Federal Government agencies; the National
Organization for Rare Disorders; and the Genetic Alliance. Rare Disease Day at
NIH (RDD@NIH) will be held in the Natcher Auditorium (Building 45) from 8:30
a.m. to 5:00 p.m. on Thursday and from 8:30 a.m. to 4:00 p.m. on Friday.
Attendance is free and open to the public.
In addition to the various scheduled talks (see agenda), we expect to have
posters and exhibits from many groups relevant to the rare diseases research
community. In association with the Global Genes Project, we again encourage all
attendees to wear their favorite pair of jeans.
While attendance is free, please register on the
event's website because we would like to know how many people are
planning to attend. If you would like to display a poster or exhibit, please
include that information on your registration form. You can contact Dr. David
J. Eckstein at David.Eckstein@nih.gov
for more information.
Visit the NIH
Visitors and Security website for the latest instructions and updates.
Please allow 30 minutes to move through security.
About Rare Disease Day
Rare Disease Day was established to raise awareness with the public about rare
diseases, the challenges encountered by those affected, the importance of
research to develop diagnostics and treatments, and the impact of these
diseases on patients' lives. The focus of Rare Disease Day 2010 was 'Patients
and Researchers, Partners for Life!' and is aligned with ORDR's philosophy that
researchers need to work closely with patients and patient advocacy groups to
maximize chances for success. This philosophy has been put into practice in our
very successful
Rare Diseases Clinical Research Network.
There are about 7000 rare diseases identified in the United States. About 80
percent of rare diseases are genetic in origin and it is estimated that about
half of all rare diseases affect children. Rare diseases can be chronic,
progressive, debilitating, disabling, severe and life-threatening. Information
is often scarce and research is usually insufficient. People affected face
challenges such as delays in obtaining a diagnosis, misdiagnosis, psychological
burden and lack of support services for the patient and family. The goals
remain for rare disease patients to obtain the highest attainable standard of
health and to be provided the resources required to overcome common obstacles
in their lives.
By highlighting these issues, the NIH Office of Rare Diseases Research hopes to
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Raise awareness of rare diseases
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Strengthen the voice of patients and patient advocacy groups
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Give hope and information to patients
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Bring stakeholders closer together
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Coordinate policy actions within the United States and with other countries
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Inspire continued growth of the awareness of rare diseases
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Emphasize rare disease research and the search for new therapeutics
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Get equality in access to care and treatment
The first Rare Disease Day sponsored by EURORDIS was held in Europe on February
29, 2008. February 29th was chosen since it is a rare day and it is symbolic of
rare diseases. 2009 was the first time that Rare Disease Day was observed in
the U.S. In addition to 17 European countries participating in Rare Disease Day
2009, the United States was joined by Argentina, Australia, Canada, China,
Colombia, and Taiwan in celebrating the first global Rare Disease Day. The
National Organization for Rare Disorders serves as the coordinator of this
activity in the United States.
The Global Genes Project
Global Genes Project is a leading rare and genetic disease patient advocacy
organization led by Team RARE (Rare advocacy, Awareness, Research, Education)
and promotes the needs of the rare and genetic disease community under a
unifying symbol of hope – the Blue Denim Genes RibbonTM.
What began as a grassroots movement in 2009 to use the simple concept of "jeans
and genes" to increase awareness for rare and genetic disorders has grown to
over 400 global organizations. Their mission is centered on increasing rare
disease awareness, public and physician education, building community through
social media and supporting research initiatives to find treatments and cures
for rare and genetic diseases.
Global Genes organizes a Wear That You CareTM awareness campaign on
World Rare Disease Day where supporters wear the Genes RibbonTM and
their favorite pair of jeans to show support for people fighting rare and
genetic diseases. They encourage patients and family advocates to share their
stories through social media via creative photo campaigns and blog articles. In
2013, the organization will launch a Twitter campaign with the hashtags
#careaboutrare and #wearthatyoucare.
For more information on how to receive Blue Denim Genes RibbonsTM and how to
participate in the Wear That You CareTM campaign, visit
http://globalgenes.org/world-rare-disease-day/.