February 24, 2020
TOPIC: Uncategorized
#NORDinthenews: NORD’S Mary Dunkle interviewed on WFAN Sports Radio on all things rare disease
Posted at February 2, 2020 09:36 am by Valaree DonFrancesco
December 6, 2019
TOPIC: Uncategorized
Students for Rare Featured Student: Viridiana Murillo
Posted at December 12, 2019 08:33 am by Valaree DonFrancesco
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 at December 12, 2019 12:41 pm by Valaree DonFrancesco
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
September 11, 2019
TOPIC: Uncategorized
NORD releases statement on Administration’s recent changes to medical deferred action policy
Posted at September 9, 2019 12:08 pm by Valaree DonFrancesco
NORD has released a statement on today’s House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties hearing on the Administration’s recent revocation of medical deferred action policy and its potentially devastating impact on the rare disease community. The statement in its entirety can be read here.
September 6, 2019
TOPIC: Uncategorized
Voices of Rare Cancer: Mackenzie’s Story
Posted at September 9, 2019 09:18 am by Valaree DonFrancesco
Singing has always been a big part of Mackenzie’s life. She auditioned for her school’s choir in seventh grade and continued singing throughout high school. But for a time, as Mackenzie weathered a rare cancer diagnosis, her voice faded, and it looked like she would never sing again.
It started during her junior year with a… Read More
