Rare Disease Report

Speakers Announced for 2017 Global Genes Summit

JULY 31, 2017
James Radke
The list of speakers scheduled for September’s Global Genes Rare Patient Advocacy Summit has been announced and it is a who’s who of the rare disease community. Based on the list, the Summit will be a great opportunity for patients and advocates to gain a better understanding of the rare disease space, the orphan drug development & regulatory process, advocacy essentials, the business of running a non-profit, and much more. In addition, there will be many rare disease patients sharing their experiences of overcoming obstacles to achieve their goals and/or dreams.
The speakers include:
Christopher Austin, MD
Annette Bakker, PhD
President and Chief Scientific Officer
Children's Tumor Foundation
Bruce Bloom, DDS, JD
President and Chief Science Officer
Cures Within Reach
Betsy Bogard
Director, Global Research Development
International FOP Association
Kimberly Bower, MD
Chief of Palliative Medicine
Rady Children's Hospital San Diego
Tara Britt
Associate Chair, NC Rare Disease Advisory Council;
Founder, NC Rare Disease Innovations Institute
Melissa Bruebach
Financial Analyst
HealthFitness Corporation
Matthew Burkhardt
Self Bio, Inc.
Kendall Davis, MPH
Senior Manager, Corporate and Foundation Alliances
Global Genes
Aris Economides, PhD
Vice President of Research
Regeneron Pharmaceuticals, Inc.
Allison Goetsch. MS, CGC
Genetic Counselor
Ann & Robert H. Lurie Children’s Hospital of Chicago
Steven Gray, PhD
Assistant Professor
University of North Carolina at Chapel Hill
Dave Jacob
ThinkGenetic Foundation
Howard Jacob, PhD
EVP Genomic Medicine, Chief Genomic Medicine Officer
HudsonAlpha Institute for Biotechnology
Walter Kowtoniuk, PhD
Director, Strategy and Operations
Fulcrum Therapeutics
Lori Leathers
Daniel MacArthur, PhD
Co-Director, Medical and Population Genetics and the Center for Mendelian Genomics
The Broad Institute of MIT and Harvard
Tim Miller, PhD
President & CEO
Abeona Therapeutics Inc.
Ethan Perlstein, PhD
Founder & CEO
Nerissa Ramsey
Hope for HIVEP2
Steve Roberds, PhD
Chief Scientific Officer
Tuberous Sclerosis Alliance
Lisa Schoyer
RASopathies Network
Alvin Shih, MD, MBA
Randolph Soltys, PhD
Vice President, Drug Safety & Pharmacometrics
Regeneron Pharmaceuticals
Susan Stein, MPH
President and CEO
Connexion Healthcare
Brad Thompson
Lead Parent Support Specialist
Child Neurology Foundation
James Valentine, JD, MHS
Hyman, Phelps & McNamara, P.C.
Lalé Walsh
Executive Director
Neuromuscular Disease Foundation (NDF)
Simon Wheatcroft

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