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Dec. 9, 2019

TOPIC: Featured News

#NORDinthenews: Washington Post profiles NORD’s Rare Disease Database and Rarediseases.org

Posted by Laura Mullen

On Saturday, December 7, the Washington Post‘s Erin Blakemore profiled NORD’s Rare Disease Database and website, rarediseases.org, in the paper’s Health column. The following is an excerpt from the article:

 

“The database contains reports on more than 1,200 of the disorders, from Aarskog syndrome, a rare genetic condition that produces facial, skeletal and genital abnormalities, to Zollinger-Ellison syndrome, which causes tumors that stimulate the production of stomach acid. It covers just about everything, such as symptoms, affected populations, diagnoses and known therapies.

Most important, the database identifies clinical trials and member organizations where patients can find more information and support.

NORD also offers educational videos, advocacy information and a patient registry.

With rare conditions, there is strength in numbers — and more information out there than you might think.

Curious about rare diseases? Visit the NORD at rarediseases.org to explore the database.”

 

The article in its entirety can be read here.