Resource Library

Research & Drug Development

Published March 1, 2021

Orphan Drugs in the U.S.: An Examination of Patents and Orphan Drug Exclusivity

Legislative Advocacy, Research & Drug Development

Published December 3, 2020

Orphan Drugs in the U.S.: Rare Disease Innovation and Cost Trends in 2019

Legislative Advocacy, Understanding Rare Disease

Published November 19, 2020

Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.: A 30-Year Comparative Analysis

Legislative Advocacy, Research & Drug Development

Published November 1, 2020

Barriers to Rare Disease Diagnosis, Care and Treatment in the U.S.: A 30-Year Comparative Analysis Fact Sheet

Diversity, Equity & Inclusion, Get Involved, Understanding Rare Disease

Published October 1, 2020

Ensuring Access to Telehealth for Rare Disease

COVID-19

Published November 1, 2020

COVID-19 Community Survey Report #2

COVID-19

Published May 5, 2020

COVID-19 Community Survey Report #1

COVID-19

Published May 1, 2020

COVID-19 Community Survey Fact Sheet

Legislative Advocacy, Research & Drug Development

Published December 18, 2018

Orphan Drugs in the U.S.: Exclusivity, Pricing and Treated Populations

Legislative Advocacy, Research & Drug Development

Published January 1, 2023

Orphan Drug Act Fact Sheet

Research & Drug Development

Published October 17, 2018

Orphan Drug Trends in the U.S. in 2018

Research & Drug Development, Understanding Rare Disease

Published May 5, 2018

5 Myths about the Orphan Drug Act

Legislative Advocacy, Research & Drug Development

Published May 1, 2018

Orphan Drug Costs and Expenditures

Legislative Advocacy, Research & Drug Development

Published March 1, 2021

Study on Orphan Drug Costs and Use

Understanding Rare Disease

Published September 7, 2017

How Much Does the Health Insurance Plan Cost?