Rare Disorders Without
Borders
Today marks the sixth international Rare
Disease Day when hundreds of patient organizations from more than 60 countries
participate in activities to raise awareness about the 6,000 rare diseases
affecting more than 60 million people in Europe and the US alone. View the
official Rare Disease Day video. View
the official Rare Disease Day video.
DIA and the Rare Diseases Patient
Community
DIA is working to ensure that the "voice of the patient'
is heard globally in every facet of the discovery, development, and life cycle
management of pharmaceuticals, biotechnology, medical devices, and related
products. Visit the DIA Rare Disease Day
site for upcoming events, educational materials, videos, and
more.
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Important
Dates:
RESOURCES:
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How is DIA Raising Awareness?
In 2012, DIA and NORD hosted the 2nd Annual US Conference on Rare Diseases
and Orphan Products which brought together more than 300 stakeholders -
patients, patient organizations, researchers, drug and device companies,
investors, thought leaders and government – that met to discuss rare diseases
and orphan product research, development and access to address the needs of the
millions that suffer with rare diseases. Save the dates for 2013: October 7-9 in Bethesda, MD.
How is DIA Helping?
"My daughter suffers from a rare disease called Mastocytosis. We just found
out last summer that I also have another version of the same disease called Mast
Cell Activation Disorder. There is a medication that is available for us to take
it is called Zaditen and it is only available in the UK and the DIA is actually
helping us right now to get this medication into the United States so we can
continue to use it.” - Kelli Foster, Patient Advocate, The
Mastocytosis Society
“And for the people that have one of these conditions, they can be
life-altering, and in some cases, life-ending, and having that voice for those
people and having a group that is willing to listen to us and wants to learn
more about it, it’s so meaningful, it’s very hard to describe.” -
Daniel Smith, National Dysautonomia Research Foundation
In the News
As
Rare Disease Day Approaches, Patient Advocates Celebrate 30 Years of
Collaboration But Worry About Looming Budget Cuts
Now
THAT'S a Great Friend: Seven-Year-Old Boy Raises Over $300,000 to Help Find a
Cure for His Classmate's Rare Genetic Condition
Man
with a Plan: Emil Kakkis Aims to Lure Big-Market Drugs Toward Rare Diseases
Orphan
Drugs – An Alternative to the declining Blockbuster Model?
Join the Conversations on Rare
Disease Day’s Social Media
facebook.com/rarediseaseday
‘Like’ the RDD Facebook page, view our timeline and
participate in the conversation on Rare Disease Day
twitter.com/rarediseaseday
Follow Rare Disease Day on Twitter @rarediseaseday
and use the hashtag #raredisease
youtube.com/rarediseaseday
Watch the videos, comment and link to the many videos and upload your
video to the Rare Disease Day channel via
rarediseaseday.org
flickr.com/photos/rarediseaseday
Upload your photo on to the Rare Disease Day Photo
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