Event
Expert Office Hours
Get one-to-one time with experts on topics such as data collection, research strategy, therapy development, and engaging with the FDA.
Expert Office Hours
Tuesday, April 30, 1pm & 4:30pm
*not all experts are available for all office hours
Get answers to your questions by scheduling a one-to-one session with one of our experts on topics such as data collection, research strategy, therapy development, and engaging with the FDA. Appointments will open in March for registered attendees.
Confirmed attendees may reserve a spot in March.
Lara Bloom
President & CEO
The Ehlers-Danlos Society
Max Bronstein
Executive Director, Government Affairs & Patient Advocacy
Crinetics Pharmaceuticals
Betty Cabrera, MPH
Director of Research Engagement and Operations,
Gene Therapy Center at UCSD
Jennifer Farmer
CEO
Friedreich’s Ataxia Research Alliance
Ben Forred, MBA
Director, Translational Research & The CoRDS Registry
Sanford Health
Sharie Haugabook, Ph.D. (with Liz Ottinger, Ph.D.)
Acting Head of Project Management in the Therapeutic Development Branch, Division of Preclinical Innovation
NCATS
Dave Jacoby, M.D., Ph.D.
Fellow in Clinical Science and Vice President, Head of Discovery Medicine
BioMarin
Dan Lavery, Ph.D.
Director of the CDKL5 Program of Excellence
Orphan Disease Center at University of Penn
Juan Carlos Lopez, Ph.D.
Managing Director
RTW Charitable Foundation
Lea Ann Browning McNee
Director of Communication & Engagement
Reagan-Udall Foundation
Casey McPherson
Founder, To Cure A Rose Foundation
Manoj Malhotra, M.D.
Chief Medical Officer
Ovid Therapeutics
Eric Marsh, MD, PhD
Clinical Director, Neurogenetics Program, Associate Professor of Neurology
Children’s Hospital of Pennsylvania
Katherine Maynard
Partner, PWR
Juliane Mills, M.P.H., MS.c.
Strategy Lead
Worldwide Clinical Trials
Liz Ottinger, Ph.D. (with Sharie Haugabook, Ph.D.)
Senior Program Manager Division
Division of Preclinical Innovation, NCATS
Debbie Requesens
Director, JumpStart Program
Orphan Disease Center, University of Pennsylvania
Charlene Son Rigby
CEO, Global Genes
Gabrielle Rushing
Senior Program Director
CSNK2A1 Foundation
Zohreh Talebizadeh
Senior Director of RARE-X Research Program
Global Genes
Ramona Walls, Ph.D.
Executive Director of Data Science
Critical Path Institute (C-Path)
Cara Weismann, Ph.D.
Director for the Program of Excellence
Orphan Disease Center
