Resource Library

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?

Understanding Rare Disease

Published September 7, 2017

Which Doctors and Hospitals Are In My Insurance Network?

Gene Therapy, Research & Drug Development, Understanding Rare Disease

Published November 6, 2018

Terapia gênica: suas perguntas respondidas

Research & Drug Development, Understanding Rare Disease

Published June 2, 2020

What is a Registry?

Get Involved, Understanding Rare Disease

Personal Stories from the New Era of Patient Advocacy

Get Involved, Understanding Rare Disease

Rare Disease Patient Stories

Get Involved, Legislative Advocacy

Published December 1, 2016

What is the Rare Action Network?