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

Patient/Community Engagement & Health Information

Three Rare Disease Day attendees with the Rare Disease Day logo
Register Now for Rare Disease Day at NIH

The Feb. 28, 2019, event will feature interactive panel discussions as well as posters, exhibits, tours and more.

Rare Disease Day 2019 Twitter chat logo
NIH Twitter Chat

Join NIH and NCATS for a Twitter chat on rare diseases Feb. 22, 2019, at 1 p.m. ET, using #NIHchat.

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.

Undiagnosed Diseases

The goals of the Undiagnosed Diseases Program, led by the NIH Common Fund, are to provide answers and advance medical knowledge about rare and common diseases.

Clinical Trials at NIH

Patient involvement in clinical research helps investigators uncover better ways to treat, prevent, diagnose and understand human diseases.

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.

Undiagnosed Diseases

The goals of the Undiagnosed Diseases Program, led by the NIH Common Fund, are to provide answers and advance medical knowledge about rare and common diseases.

Clinical Trials at NIH

Patient involvement in clinical research helps investigators uncover better ways to treat, prevent, diagnose and understand human diseases.

Have a rare disease?

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

Interested in therapy development?

Access tools that can help patient groups advance medical research and patient-focused therapy development via the NCATS Toolkit for Patient-Focused Therapy Development.

Learn more about NCATS’ Achievements in Advancing Translational Sciences.

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.

Therapy Development Resources

The NCATS Toolkit for Patient-Focused Therapy Development (Toolkit) was created to provide a collection of online resources that can help patient groups advance through the process of therapy development and provide them with the tools they need to advance medical research. Download the Toolkit fact sheet (PDF - 645KB).