Wednesday, February 27, 2013

DIA and the Rare Diseases Patient Community

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.

Important Dates:

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
‘Like’ the RDD Facebook page, view our timeline and participate in the conversation on Rare Disease Day
Follow Rare Disease Day on Twitter @rarediseaseday
and use the hashtag #raredisease
Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via
Upload your photo on to the Rare Disease Day Photo Wall
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