Rare University
Additional Rare Disease Education

Game Changing Science, Technology and Clinical Care: What Patients Should Expect

Recorded LIVE at the 2016 RARE Patient Advocacy Summit: September 22nd, 2016

In the opening panel discussion of this year's RARE Summit, Global Genes's Medical Scientific Advisory Board discussed current challenges and the optimistic future of rare disease research and treatment.



Peter Goodhand, Executive Director of Global Alliance for Genomics and Health

Peter Goodhand is a leader in the global health sector and is currently Chair of the Board of Health Technology Exchange, Chair of the Steering Committee of the Occupational Cancer Research Center, Co-chair of the Medical and Scientific Advisory board of Global Genes, Board Member of the AGE-WELL NCE, and ‎on the Steering Committee of the Global Genomic Medicine Collaboration.

Anthony Philippakis, Chief Data Officer at the Broad Institute


Anthony Philippakis is a physician, geneticist, and data scientist at Broad Institute and a cardiology fellow at Brigham and Women’s Hospital, where he cares for patients with rare genetic cardiovascular diseases. Currently, he is working to launch a “Genomic Matchmaker” database that will allow clinicians and researchers to rapidly scan vast catalogs of genomic data to find other samples with the same genetic changes.

Alvin Shih, Head of Research and Development at Retrophin


Alvin Shih joined Retrophin in 2014 as Executive Vice President and Head of Research and Development. Prior to joining Retrophin, Alvin was a founding member of the Pfizer Rare Disease Research Unit.

Ryan Taft, Senior Director of Scientific Research at Illumina, Inc.


Ryan J. Taft, PhD, is Director of Scientific Research at Illumina, with a focus on the development and deployment of diagnostic whole genome sequencing worldwide, particularly for patients with rare and undiagnosed genetic disease. Dr. Taft is a founding member of the Global Leukodystrophy Initiative; scientific advisor of the Mission Massimo Foundation; and, co-chair of the Medical and Scientific Advisory Board of Global Genes.

Join our mailing list to receive updates on future rare disease programs or return to the 2016 RARE Summit program page for more recorded sessions.