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July 27, 2015

TOPIC: Featured News, Sticky Posts for Homepage

Member Spotlight: LGDA

Posted by Christina Jensen
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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

July 23, 2015

TOPIC: Uncategorized

NORD Issues Statement on FDA’s New Associate Director for Rare Diseases

Posted by Jennifer Huron

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on today’s announcement that Jonathan C. Goldsmith, MD, FACP, will lead the Rare Diseases Program in the Center for Drug Evaluation and Research (CDER) Office of New Drugs at the Food and Drug Administration (FDA).

NORD congratulates Jonathan C. Goldsmith,… Read More