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World Rare Disease Day
February 24, 2010 by JCB
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Unite Bloggers for World Rare Disease Day!
In doing some research of my own, and sharing some info with some of you here in Spectrum, I came across the following information.
The below event is sponsored by the Children's Rare Disease Network ( ) and thought it to be relevant information to share the Spectrum community for those who wish to participate. http:/
As we speak out about NMO with the intent to be heard and others to be made aware of this disease, the more voices that speak, the louder that voice is.
Whether it be thru this event or here at Spectrum, please do spend just a moment or two of your valuable time to get involved and share the things you see, have learned or have experienced!
Jim
BLOG for Rare Disease!
We want to unite bloggers to raise awareness and support for rare disease.
How can you help?
We need everyone - moms, dads, family, friends, medical bloggers, pharma bloggers – anyone with something to say about rare disease. There is no limit on the number of posts, the type of posts or the direction of thoughts and opinions.
If you would like to be a part of the first ever “Blog for Rare” project, email Catherine Calhoun at hellocatcal@gmail.com. Email your link by Friday, February 19, 2010 with subject line “Blog for Rare.”
“Blog for Rare” goes live on the Children’s Rare Disease Network blog, SNiPs, the week of World Rare Disease Day (February 28, 2010).
You can also read this on www.crdnetwork.org/blog
A Rare Approach to a Rare Disease
JCB
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An Opportunity to Educate and Raise Awareness
To all who helped educate and raise awareness during this campaign, please know that you have NORD’s heartfelt thanks. Many patients and patient organizations worked with their media contacts to educate about specific diseases, in addition to providing general information.
Our mandate now is to keep the momentum going throughout the year. Education, advocacy, awareness and research are our most important goals. Together, we can do it!
Here’s a brief sampling of media posts regarding Rare Disease Day 2010:
NORD President and CEO Peter L. Saltonstall on Larry King Live Facebook page.
Discovery Health TV featured a special Rare Disease Day area on its website.
The following ABC News story was made possible by patient stories submitted to NORD for Rare Disease Day.
Several companies issued press releases like the following, and BIO (the Biotechnology Trade Organization) posted a blog:
Alexion
BioMarin
BIO
Flip-Cam Winners Are Announced
Shire Pharmaceuticals donated five Flip-type camcorders for Rare Disease Day, one for NORD’s own purposes and four to be awarded to other patient organizations serving as Rare Disease Day Partners. NORD invited all patient organization Partners to submit brief descriptions of how they would use a camcorder.
To select the winners (since we at NORD wished we could give a Flip-cam to everyone who entered the contest), we held a drawing yesterday at a Rare Disease Day event at the University of Connecticut. A volunteer from the audience (UCONN sophomore Liah Nelson) drew names from a bowl. The Flip-cam winners are:
o Alsstrom Syndrome International
o ECD Global Alliance
o MAGIC Foundation
o Periodic Paralysis Association
Thanks to all who entered this contest!
Watch for Hall of Fame Soon
We are working on the Research Hall of Fame now and will notify our RDD Partners when it is complete, later this week. We’ve received some wonderful submissions and we thank all who participated.
Watch for Patient Stories in Future
NORD is grateful to all the patients and patient organizations submitting stories through the Rare Disease Day campaign. These stories make it possible for us to respond quickly when we receive media requests. (For instance, the reporter from ABC News who contacted us on Thursday needed to interview patients by 4:30 p.m. that day. Because we had good stories on hand, we were able to contact the families quickly and connect them with the reporter.)
Mystery Diagnosis is considering some future episodes on story ideas NORD has given them. We receive many other requests from the media throughout the year, and we never release patient names for stories without first making contact with the patients or families who have submitted information to us.
We’ll also be publishing more Rare Disease Day patient stories in the weeks to come on NORD’s own website and the Rare Disease Day US site. Thank you for your support of this important educational initiative!
Keep the Momentum Going!
Rare Disease Day has helped mobilize the global rare disease community. Now, the challenge is to keep the momentum going. NORD will be working with EURORDIS and other international partners to make this happen. We encourage everyone to stay in touch…stay connected…and remember: Alone we are Rare. Together we are Strong!
JCB 707 days ago