Publications

Infographic: Rare isn’t so rare

Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the U.S. is considered rare. Learn more in this infographic.

Infographic for Providers: 2020 Rare Disease Health Care Access Study

Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, and marginally worse anxiety.

Infographic for Patients & Families: 2020 Rare Diseases Heath Care Access Study

Even when compared to adults with common chronic diseases, adults in Minnesota with rare diseases had significantly worse stigma, physical function, fatigue, and depression, and marginally worse anxiety.

2022 Annual Report

Summary of activities undertaken by the Council for Federal Fiscal Year 2022 – Created December 2022

GAO Highlights 2022: Rare Diseases

By definition, few people have any specific rare disease. But there are many different rare diseases—about 7,000—and as a result, an estimated 30 million people in the United States have one or more of them.

The National Economic Burden of Rare Disease Study – 2021

This study aims to provide the most comprehensive assessment of the total burden of RD to date, including filling the knowledge gap in some of the less well-understood cost components (such as productivity loss in both the labor market as well as in social life) and caregiver economic burden.