Resource Library

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?

Understanding Rare Disease

Published September 7, 2017

Is My Prescription, Medication, and/or Treatment Covered?