Rare Disease News

Rare Disease Report and NORD Announce Editorial Collaboration

Published August 6, 2015 by NORD

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NORD announced today, an editorial collaboration between Rare Disease Report and NORD, an exciting opportunity for the rare disease community.

Rare Action™ Road Tour, Salt Lake City, UT

Published August 6, 2015 by NORD

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Greetings from Salt Lake City, This is part 1 of 2 of two posts on SLC. Tomorrow I will post on our State Ambassador, Gina Szajnuk. Today, I’m happy to share a …

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Rare Action™ Road Tour, Denver, CO

Published August 3, 2015 by NORD

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Greetings from Denver, As the road tour heads further west, the distances between stops grow longer and longer. More time in the car means less time to blog. But, 10 hours and 632 …

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Taking Rare Action™ on the Road

Published August 3, 2015 by NORD

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Follow the cross-country road tour that introduces the NORD State Ambassadors and promotes the Rare Action Network™.

Member Spotlight: CLOVES Syndrome Community

Published August 3, 2015 by NORD

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Supporting, educating, empowering and improving the lives of those affected by CLOVES syndrome. .

Rare Action™ Road Tour, Oklahoma City, OK

Published July 30, 2015 by NORD

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Greetings from Oklahoma, The awesome folks in the NORD marketing department created the snazzy logo and imagery that you see above (and in all previous posts). Driving through Oklahoma today, …

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Miss Iron County Supports Rare Disease Advocacy and Awareness

Published July 29, 2015 by NORD

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Miss Iron County explains how she supports rare disease advocacy and awareness during a Miss Utah competition.

Rare Action™ Road Tour, Houston, TX

Published July 28, 2015 by NORD

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Howdy from Houston, The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways …

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Rare Action™ Road Tour, Tallahassee, FL

Published July 28, 2015 by NORD

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Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules …

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Member Spotlight: LGDA

Published July 27, 2015 by NORD

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LGDA, Lymphangiomatosis & Gorham’s Disease Alliance works hard to support people affected by lymphatic anomalies. Read more about this spotlight member:

Rare Disease News

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