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January 7, 2020

TOPIC: Featured News, Patients & Members

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted by Laura Mullen

At NORD, our priority is advancing rare disease research and innovation by working together to overcome critical challenges. The input of patients and caregivers plays an integral role in getting beyond obstacles and moving towards a brighter future for the rare disease community.

In… Read More

December 20, 2019

TOPIC: Featured News, Press Releases

NORD Welcomes Two New Members to Board of Directors

Posted by Laura Mullen

Washington, DC, December 20, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new members to its Board of Directors, effective immediately.

Joining the Board of Directors are Susan A. Berry, MD and Shafali Spurling Jeste,… Read More

December 9, 2019

TOPIC: Featured News

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

Posted by Laura Mullen

On Saturday, December 7, the Washington Post‘s Erin Blakemore profiled NORD’s Rare Disease Database and website,, 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,… Read More

December 6, 2019

TOPIC: Uncategorized

Students for Rare Featured Student: Viridiana Murillo

Posted by Laura Mullen

Tell us a little bit about yourself! Where are you from?

My name is Viridiana Murillo, and I am from Pomona, California.  I am a first-generation Mexican-American scientist and the first in my family to explore the field of genomics and data science. With six years of combined academic research and clinical lab experience, I have a… Read More