Improving the Diagnostic Odyssey for Rare Disease Patients

Speakers

Linda Goler Blount, MPH
Black Women’s Health Imperative, President and CEO
tboyd@bwhi.org

Nelly Ganesan, MPH
Avalere, Principal
nganesan@avelere.com

Matthew Might, Ph.D.
University of Alabama-Birmingham, Hugh Kaul Precision Medicine Institute, Professor, Department of Medicine Director
might@uab.edu

Stephen Kingsmore, M.D., DSc
Rady’s Children’s Institute, President and CEO
skingsmore@rchsd.org

Experts and Analysts

Aaron Goldenberg, Ph.D., MPH
Center for Genetic Research Ethics and Law at Case Western Reserve University School of Medicine, Associate Director
aaron.goldenberg@case.edu

Brendan C. Lanpher, M.D.
Mayo Clinic, Clinical Geneticist
lanpher.brendan@mayo.edu

Holly K. Tabor, Ph.D.
Stanford University Department of Medicine, Associate Professor of Epidemiology and Population Health
hktabor@stanford.edu

Government

Christopher P. Austin, M.D.
National Institutes of Health’s National Center for Advancing Health Translational Sciences, Former Director; Flagship Engineering, CEO-Partner
caustin@flagshippioneering.com

Dan Kastner, M.D., Ph.D.
National Human Genome Research Institute, Scientific Director
kastnerd@mail.nih.gov

Anne R. Pariser, M.D.
National Center for Advancing Translational Sciences, Office of Rare Diseases Research Director
anne.pariser@nih.gov

Stakeholders

Matt Eyles, M.S.
America’s Health Insurance Plans (AHIP), President and CEO
meyles@ahip.org

E. Gay Grossman
Neurogene, Inc., Director of Patient Engagement; ADCY5.org, Co-Founder
ggrossman@ADCY5.org

Danny Miller
MEPAN Foundation, CEO; Illumina Rare and Undiagnosed Genetic Diseases, Patient Ambassador
danny@mepan.org

Julia Jenkins, MA
EveryLife Foundation for Rare Diseases, Executive Director
jjenkins@everylifefoundation.org

Rachel Sher, J.D., MPH
National Organization for Rare Disorders, Vice President, Regulatory and Government Affairs
rsher@rarediseases.org

Marshall Summar, M.D.
Children’s National Rare Disease Institute, Director
msummar@childrensnational.org

Grace Whiting, J.D.
National Alliance for Caregiving, President and Chief Executive Officer
grace@caregiving.org


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