St. Louis, MO
President, Rare Genomics Institute
Represented: Patients, Caregivers, and Patient Advocates
Jimmy Lin, MD, PhD, MHS, is a 2012 TED Fellow and Founder and President of Rare Genomics Institute, the world's first platform to enable any community to leverage cutting-edge biotechnology to advance understanding of any rare disease. Partnering with top medical institutions, Rare Genomics works with patients and families to design custom research projects for rare diseases without existing research organizations. Patient advocates and scientists walk with each family to research cases, connect with academics and industry, design projects, help with fundraising, and provide pro-bono scientific consulting. Rare Genomics is building an ecosystem of patient-centric tools, including a patient-owned biospecimen bank, patient-controlled EMR, a patient-managed data repository, and a patient-led social media platform, among others, and believes that empowered patient is key to the next revolution in health care.
Lin is Director of Clinical Genomics at the National Institutes of Health/National Cancer Institute, Center for Cancer Research, Genetics Branch. Previously, he was a research instructor at Washington University in St. Louis and, while at Johns Hopkins, led the computational analysis of the first-ever exome sequencing studies for any human disease. He has numerous publications in science, nature, cell, nature genetics, and nature biotechnology, and has been featured in multiple media outlets.
Lin served as a member of the Advisory Panel on Patient Engagement from April 2015 - April 2018.
Conflict of Interest Disclosures
As of November 5, 2016:
Financial or Business Associations:
- Natera, Employer, Stock. Self
- Unlease Genomics, Employer, Self
- Rare Genomics Institute, President; Board of Directors, Chairman
- Global Genes Project, Scientific Advisory Board, Member
- Syndromes Without A Name, Scientific Advisory Board, Member
- The Angiogenesis Foundation, Scientific Advisory Board, Member
- Consano, Scientific Advisory Board, Member
- Children's Medical Safety Research Institute, Scientific Advisory Board, Member
- Open Onward, Scientific Advisory Board, Member