A New Paradigm: Patients' Data Powering Progress with Nicole Boice

New technology can take us far, but not without significant behavior change and reimaging process and participants. We believe that patient advocates are becoming critical partners and drivers of change in research and medicines development. They are demanding that we rethink our old approaches in research and collaboration, and that we respect their critical role.

Only the live session qualifies for CEUs but when possible, we host the recordings on our website and NSGC recommends participants to use their personal email instead of work email addresses to ensure they receive their CEU certificates.

Ambry Genetics is approved as a provider for continuing education program by NSGC and ASCLS P.A.C.E ® Program.

Nicole Boice | Presenter

Co-Founder & Executive Director, RARE-X

Nicole founded Global Genes in September 2008 catalyzed by a friend whose son was born with a rare genetic condition called Jouberts Syndrome. Their journey to a diagnosis is what inspired Nicole to create Global Genes and become a committed champion for rare disease patients and their families.

Nicole successfully launched and built Global Genes into a multi-million dollar non-profit organization, fulfilling the vision and mission of creating a connected, empowered and inspired global rare disease community. Since its inception, Global Genes has impacted hundreds of thousands of patients worldwide, engages with over 700 rare disease patient advocacy organizations in over 25 countries, and has partnered with over 100+ biopharma partners and academic research institutions. Global Genes has become an important hub and connecting point for the global rare disease ecosystem.

In addition to her role at Global Genes, Nicole has co-founded RARE-X, a new non-profit, that is set to become the largest collaborative patient-researcher data engagement and federated data platform the world over. The intention is to accelerate disease understanding, diagnosis, and the development of future cures. This will be world changing.

In her early career, Nicole held numerous consulting, sales, and marketing executive roles over her 30 years in business. Nicole has worked with world-class organizations in media, pharmaceuticals, venture and the high-tech sector. Nicole is a proven leader, passionate creator, collaborator and entrepreneur.

Nicole serves as a member of ICORD, a founding board member of the Alliance for Regenerative Medicine Foundation for Cell and Gene Medicine, and serves in an advisory capacity for several biotech and patient advocacy organizations.

Nicole holds her BS in Political Science from the University of California San Diego. She is a proud wife and mother of two college age children, and in her spare time enjoys yoga, beach volleyball, her Peloton, annual family trips to Cabo San Lucas and watching women’s college soccer.

Susan Toomey, MS, CGC | Moderator

Genomic Science Liaison, Ambry Genetics

Susan Toomey joined Ambry Genetics in 2017 as the General Genetic Specialist for the Mountain and Pacific Northwest territories. Susan received her Masters of Science Degree in Biophysics and Genetics from the University of Colorado; and holds a BA in Sociology and Evolutionary Science from the University of Cincinnati. She has held previous genetic counseling positions at the Colorado Genetics Laboratory, Colorado Center for Reproductive Medicine, and the Children’s Hospital Colorado in the Neurocutaneous and Neuromuscular Clinics.