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July 28, 2015

TOPIC: Advocacy, Featured News, Get Involved

Miss Iron County Supports Rare Disease Advocacy and Awareness

Posted by Lisa Sencen

Recently, NORD was happy to receive a Facebook message from a young woman named Angelia Benson. She expressed interest in using NORD’s logo in a parade as part of her competition to become Miss Utah.  We were thrilled to learn that Angelia, who is the reigning Miss Iron County Utah, was interested in rare diseases and in using her… Read More

July 27, 2015

TOPIC: Featured News

Member Spotlight: LGDA

Posted by Lisa Sencen

The mission of the LGD Alliance is to improve the care of patients with lymphangiomatosis and Gorham’s disease by promoting research that will identify effective treatments and ultimately a cure for these diseases. The Lymphangiomatosis & Gorham’s Disease (LGD) Alliance is a non-profit foundation dedicated to patient support, advocacy, and the finding of effective treatments and cures for those affected… Read More

July 23, 2015

TOPIC: Advocacy, Featured News

Rare Action™ Road Tour, Atlanta, GA

Posted by Tim Boyd

Atlanta Blog

Greetings from Atlanta, Georgia.

I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force (a NORD member organization).  As a NORD State Ambassador, Beth is hoping to advance provider education for Syringomyelia and all… Read More