Skip to main content
HHS Logo U.S. Department of Health & Human Services NIH logo National Institutes of Health

Patient/Community Engagement & Health Information

A graphic image that has stylized depictions of facts and statistics from the publication, The IDeaS Initiative: Pilot Study to Assess the Impact of Rare Diseases on Patients and Healthcare Systems. Title: Rare diseases, individually rare, collectively common. Text: The medical costs of rare diseases have been underestimated; rare diseases are collectively common, affecting an estimated 25–30 million people in the United States; individual medical costs for people with a rare disease are 3–5 times greater t
Pilot Study Finds Nationwide Medical Costs for Rare and Some Common Diseases are Likely Similar

An NCATS-led study finds that the number of individuals with rare diseases and their medical costs have been underestimated, suggesting that nationwide health care costs associated with rare diseases are likely similar to common diseases such as cancer.

Stethoscope laying on stacks of hundred dollar bills.
The Economic Burden of Rare Diseases at $1 Trillion

NCATS Acting Director Joni L. Rutter, Ph.D., co-authored an article that summarizes recent studies and reports on the estimated $1 trillion collective cost burden posed by rare diseases in the U.S. Experts recommend steps to address gaps and challenges.

Genetic & Rare Diseases

The Genetic and Rare Diseases Information Center provides up-to-date health information about numerous rare and genetic diseases.

Patient-Focused Therapy Development

The NCATS Toolkit for Patient-Focused Therapy Development is a collection of online resources that can help patient groups advance through the process of therapy development.

Rare Diseases Registry Program

The Rare Diseases Registry Program (RaDar) is an online resource that provides patient groups with guidance on how to develop registries for rare diseases.

Rare Diseases Community Resources

Learn about rare diseases and help increase awareness with these shareable resources, social media messages and graphics from NCATS.

Genetic & Rare Diseases

The Genetic and Rare Diseases Information Center provides up-to-date health information about numerous rare and genetic diseases.

Patient-Focused Therapy Development

The NCATS Toolkit for Patient-Focused Therapy Development is a collection of online resources that can help patient groups advance through the process of therapy development.

Rare Diseases Registry Program

The Rare Diseases Registry Program (RaDar) is an online resource that provides patient groups with guidance on how to develop registries for rare diseases.

Rare Diseases Community Resources

Learn about rare diseases and help increase awareness with these shareable resources, social media messages and graphics from NCATS.

Have a Rare Disease?

The Genetic and Rare Diseases Information Center (GARD) offers credible, up-to-date health information for many rare diseases.

Undiagnosed Diseases Network

The Undiagnosed Diseases Network (UDN), led by the NIH Common Fund, seeks to provide answers and advance medical knowledge about rare and common diseases. Clinicians and researchers from across the United States are involved in the UDN. Learn more about the UDN and see opportunities to get involved.

Principles of Community Engagement

This comprehensive guide, available in English and Spanish (PDF - 3.29MB), outlines core principles for engaging diverse communities in clinical research activities.

Interested in Clinical Trials at NIH?

Patient involvement in clinical research helps investigators uncover better ways to treat, prevent, diagnose and understand human diseases. Visit ClinicalTrials.gov for  information about clinical studies at NIH and other institutions that are currently enrolling patients.