Resource Library

Understanding Rare Disease

Published November 26, 2021

Rare in the Family: Navigating the Role of Patient, Parent and Caregiver

Understanding Rare Disease

Published November 24, 2021

Building Resilience in a Time of Unknowns

Understanding Rare Disease

Published March 21, 2021

Advocating For A Rare Disease Advisory Council In Your State

Understanding Rare Disease

Published June 26, 2022

The 2022 Rare Impact Awards

Understanding Rare Disease

Published November 15, 2019

10 Things You May Not Know About Rare Diseases

Research & Drug Development, Understanding Rare Disease

Published June 18, 2018

5 Myths About Orphan Drugs and the Orphan Drug Act

Insurance, Research & Drug Development, Understanding Rare Disease

Published September 7, 2017

What does an insurance plan cover?

Legislative Advocacy, Regulatory

Published January 22, 2021

Creating a Rare Disease Advisory Council in Your State

Gene Therapy, Research & Drug Development, Understanding Rare Disease

Published October 14, 2020

Just for You: Genomic Testing and Personalized Care for Rare Cancers

Genetic Testing, Research & Drug Development, Understanding Rare Disease

Published September 4, 2020

Screen Baby Screen: Perspectives on Newborn Screening

COVID-19, Understanding Rare Disease

Published August 20, 2020

Impact of the COVID-19 Pandemic on the Rare Disease Community

COVID-19, Research & Drug Development, Understanding Rare Disease

Published June 27, 2020

Drug Supply in the Time of COVID-19

COVID-19, Research & Drug Development, Understanding Rare Disease

Published April 23, 2020

Called to Action: NORD’s Response to COVID-19

COVID-19, Understanding Rare Disease

Published April 2, 2022

A Rare Response: Addressing the COVID-19 Pandemic

Get Involved, Legislative Advocacy, Understanding Rare Disease

Published February 26, 2020

Starting a Not-For-Profit Organization: You Can Do It, We Can Help