Ambassador

Robin Powers

National Organization for Rare Disorders - Volunteer
American Society of Human Genetics - Member
Global Genes - Volunteer 

Years Involved in Patient Centered Research: 10+ years
State: New York

Robin Powers is an expert in Ehlers-Danlos syndrome and other rare connective tissue disorders. Though just beginning her relationship with PCORI as an Ambassador, she is a seasoned advocate for rare diseases and patients with undiagnosed conditions and is also a motivational speaker. She is a researcher and biochemical pharmacologist, earning her degree at Buffalo State College in 2019.

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Research Phases
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

Send a request to connect with Robin Powers

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