Other Reports & Publications

Other Reports & Publications

Rare Disease Patient Survey-Preliminary Qualitative Report

In this companion to the quantitative results reported in the Council’s 2020 healthcare Access Study on access barriers to care across rare diseases, participants were asked to share their three most significant barriers (experiences that have felt difficult or frustrating) and facilitators to diagnosis, management or treatment of their ( experiences that felt positive or helpful).

Other Reports & Publications

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.

Other Reports & Publications

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.