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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

August 19, 2019

TOPIC: Uncategorized

Read the Inspiring Personal Story of a NORD Member Organization Leader

Posted at August 8, 2019 09:45 am by Valaree DonFrancesco

Neena Nizar, founder and president of the nonprofit Jansen’s Foundation, a NORD Member, was interviewed at the Living Rare, Living Stronger NORD Patient and Family Forum by BioNews Service in June. Read her inspiring personal story here.



May 20, 2019

TOPIC: Uncategorized

NORD Launches New Program Aimed at Providing Caregivers with Relief

Posted at May 5, 2019 04:00 pm by Lisa Sencen

Grant program established with gift from Retrophin

Washington, DC and San Diego, May 20, 2019–The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the Rare Caregiver Respite Program, a first-of-its-kind program aimed at providing caregivers of rare disease… Read More