To ensure patient involvement and community engagement throughout the research process, institutions must collaborate with community organizations and patient groups to identify and understand public health needs.
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Research
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Patient/Community Engagement & Health Information
Expressing Their Creative Side: Winners of the Rare Diseases Are Not Rare! 2020 Challenge Announced
Participants nationwide expressed creativity for the Rare Diseases Are Not Rare! 2020 Challenge to raise awareness about rare diseases. View the winning submissions and honorable mentions.
Spreading a Message of Hope at Rare Disease Day at NIH
The annual event — held this year on Feb. 28, 2020 — focused on forging connections in the rare diseases community, shortening the journey toward diagnosis and pursuing personalized medicine as a therapeutic approach for treating rare diseases.
Translational Science in Action: Revealing Undetected COVID-19 Spread
NIH researchers teamed up to understand the magnitude of undetected COVID-19 spread in the United States. In this video, they talk about their collaborative approach.
Genetic & Rare DiseasesThe Genetic and Rare Diseases Information Center provides up-to-date health information about numerous rare and genetic diseases.
Patient-Focused Therapy DevelopmentThe 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 ProgramThe 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 ResourcesLearn about rare diseases and help increase awareness with these shareable resources, social media messages and graphics from NCATS.
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.
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