Rare Disease Report
Physicians
Physicians
Patients & Caregivers

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
Director,
NCATS/NIH
 
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
President
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
Advisor
1847Financial
 
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
Perlara
 
Nerissa Ramsey
Advocate
Hope for HIVEP2
 
Steve Roberds, PhD
Chief Scientific Officer
Tuberous Sclerosis Alliance
 
Lisa Schoyer
President
RASopathies Network
 
Alvin Shih, MD, MBA
CEO
Enzyvant
 
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
Associate
Hyman, Phelps & McNamara, P.C.
 
Lalé Walsh
Executive Director
Neuromuscular Disease Foundation (NDF)
 
Simon Wheatcroft
Speaker
&Adapt

To stay informed about this and other upcoming meetings, follow Rare Disease Report on Facebook and Twitter.



Copyright © RareDR 2013-2017 Rare Disease Communications. All Rights Reserved.