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December 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,… 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

December 4, 2019

TOPIC: Uncategorized

#NORDinthenews: NORD Summit content featured in two new articles

Posted by Laura Mullen

BioNews Service reporter Larry Luxner attended the 2019 NORD Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC in October, and has since written two articles based on Summit content.

Sickle Cell Disease News published the following article, centered on HHS Secretary Alex Azar’s Summit speech and comments regarding progress on the sickle cell disease front, on December… Read More

December 3, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

Posted by Laura Mullen

By Debbie Drell, Director of Membership

My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she wouldn’t live to see her 30th birthday. She was 28. There was one drug recently approved for her disease, and while it… Read More

December 2, 2019

TOPIC: Featured News, Get Involved

What Questions Would You Ask About Gene Editing?

Posted by Laura Mullen

Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases. 

NORD is creating a new educational video on this topic, and we want to be sure… Read More