Resource Library

Advocacy, Legislative Advocacy, Research & Drug Development

Study on Orphan Drug Costs & Use

Advocacy, Research & Drug Development

Orphan Drug Costs & Expenditures

Advocacy, Research & Drug Development, Understanding Rare Disease

NORD RareInsights^® 5 Myths About the ODA

Advocacy, Regulatory, Research & Drug Development

Orphan Drug Trends in the United States 2018

Advocacy, Research & Drug Development

Published December 18, 2018

Orphan Drugs in the United States: Exclusivity, Pricing and Treated Populations

COVID-19

NORD RareInsights^® COVID-19 Community Survey Infographic

COVID-19

NORD RareInsights^® COVID-19 Community Survey Report

COVID-19

NORD RareInsights^® COVID-19 Community Survey Report #2

Advocacy, Regulatory, Telehealth, Understanding Rare Disease

NORD RareInsights^® Ensuring Access to Telehealth for Rare Diseases

Advocacy, Research & Drug Development

Orphan Drugs in the United States: Rare Disease Innovation and Cost Trends Through 2019

Advocacy, Regulatory, Research & Drug Development

Orphan Drugs in the United States: An Examination of Patents and Orphan Drug Exclusivity

Regulatory, Research & Drug Development

Published June 1, 2021

FDA’S Accelerated Approval Pathway: A Rare Disease Perspective

Advocacy, Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Webinar Recording: Your State Just Enacted an RDAC – Now What?

Legislative Advocacy, Rare Disease Advisory Councils (RDAC)

Toolkit: Advocating for a Rare Disease Advisory Council in Your State

Understanding Rare Disease

Published March 1, 2015

Huntington’s Disease: Emerging Concepts in Diagnosis and Treatment