TOPIC: Uncategorized
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
TOPIC: Uncategorized
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
TOPIC: Featured News, Patient Stories, Patients & Members
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
TOPIC: Featured News, Get Involved
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
TOPIC: Featured News, Patients & Members
Hello! My name is Marissa and I had the privilege of joining NORD as a member of the Research Team earlier this year. Like many, my road to NORD began with a rare disease diagnosis. When I was five, I was diagnosed with Juvenile Rheumatoid Arthritis and at seven, I was diagnosed with Reflex Sympathetic… Read More
