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March 5, 2020

TOPIC: COVID-19, Featured News, Medical, Members, Sticky Posts for Homepage

NORD’s Peter L. Saltonstall on Coronavirus Prevention and Risk for the Rare Community

Posted at March 3, 2020 02:11 pm by Valaree DonFrancesco

As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or how many people will fall ill from COVID-19 is… Read More

January 13, 2020

TOPIC: Sticky Posts for Homepage, Rare Disease Day

Join NORD on Rare Disease Day

Posted at January 1, 2020 12:14 pm by Sean Roberts

Rare Disease Day: Mission 2020 will be a day of family fun and intrigue at the International Spy Museum, one of DC’s newest family-friendly, accessible-to-all museums. NORD will be hosting activities and lunch for folks living with rare diseases, their families and other rare community supporters! Everyone is welcome.

What will the mission at the International Spy Museum entail?

Just… Read More

January 7, 2020

TOPIC: Featured News, Members, Sticky Posts for Homepage

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted at January 1, 2020 08:08 am by Valaree DonFrancesco

At NORD, our priority is advancing rare disease research and innovation by working together to overcome critical challenges. The input of patients and caregivers plays an integral role in getting beyond obstacles and moving towards a brighter future for the rare disease community.

In… Read More

November 14, 2019

TOPIC: Featured News, Members, Sticky Posts for Homepage

NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up

Posted at November 11, 2019 06:12 am by Valaree DonFrancesco

At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. 

In 1989 and again in 2003, NORD conducted a survey to better understand the barriers and facilitators of rare disease… Read More