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October 23, 2020

TOPIC: Uncategorized

Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Posted at October 10, 2020 08:33 am by Laura Mullen

At the Head of the Herd is… Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Lanie advocates for those affected by… familial dysautonomia (FD)

Lanie is located in… New York, NY

How Lanie got here… I first heard of this rare disorder when a friend’s son was born with it 14 years ago. I was merely a donor to the Foundation until I… Read More

July 14, 2020

TOPIC: Uncategorized

Rare Action Network’s Maria Bellefeuille Interviewed by Patient Empowerment Network Leading up to Living Rare Forum

Posted at July 7, 2020 02:46 pm by Laura Mullen

Patient Empowerment Network recently interviewed Rare Action Network Volunteer State Ambassador for Illinois Maria Bellefeuille on being both a rare disease patient and advocate. Maria will be speaking at this weekend’s Living Rare, Living Stronger NORD Patient and Family Forum on the “Long-term Survivor Panel: Tips, Tricks & Life Hacks for Living Your Best, Rare Life!” panel, which… Read More

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 Laura Mullen
As a lead up to #RareDiseaseDay, NORD’s Education Senior Advisor Mary Dunkle was interviewed live on WFAN Sports Radio’s “Bob Salter Show” on Sunday, February 23. The 40 minute interview touched on topics including rare disease facts, NORD’s history and mission, the significance of Rare Disease Day and the upcoming Rare Disease Day: Mission 2020 event at the International… Read More

December 6, 2019

TOPIC: Uncategorized

Students for Rare Featured Student: Viridiana Murillo

Posted at December 12, 2019 08:33 am 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 at December 12, 2019 12:41 pm 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