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Patient/Community Engagement & Health Information

Marie Westbrook, Ph.D., moderates a discussion at a table with several panelists in front of a projected slide.
Recapping Last Year’s Eventful NCATS Day

How should research data be shared? Who should have access? Read summaries of NCATS Day 2019 sessions for a breakdown of the discussions that took place about responsible data sharing and the importance of data sharing to translational science.

Attendees of previous Rare Disease Day
Get the Facts About Rare Diseases

Read our fact sheet to learn about rare diseases – what they are, who they affect and how NCATS supports innovative approaches for understanding and treating them.

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.