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Covering Rare Diseases

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Speakers

Chris Adams

Moderator

Dr. Ben Solomon

Clinical Director, National Human Genome Research Institute, NIH

Dr. Lucia Monaco

Chair, International Rare Diseases Research Consortium Assembly

Dr. Anne Pariser

Director, Ofc. of Rare Diseases Research, Natl. Ctr. for Advancing Translational Sciences, NIH

Rebecca Stewart

CEO, NRG Collective Ltd./RARE Revolution Magazine

Aaron Friedman

Senior Regulatory Counsel, Office of Orphan Products Development, FDA

Linda Goler Blount

President and CEO, Black Women’s Health Imperative

Daria Julkowska

Scientific Coordinator, European Joint Programme on Rare Diseases

Gareth Baynam

Clinical Professor, Faculty of Medicine and Health Sciences, University of Western Australia

Samuel Wiafe

Founder and Executive Director, Rare Disease Ghana Initiative

Ritu Jain

President, Asia Pacific Alliance of Rare Disease Organisations

Durhane Wong-Rieger

Chair, Rare Diseases International; President and CEO, Canadian Organization for Rare Disorders

Daniel Lewi

Chief Executive, The CATS Foundation

Melissa Haendel

Chief Research Informatics Officer, University of Colorado Anschutz

Suyash Shringarpure

Senior Scientist and Statistical Geneticist, 23andMe

Yann Le Cam

Chief Executive Officer, EURORDIS-Rare Diseases Europe

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National Press Foundation

The National Press Foundation is a 501(c)(3) whose mission is to “make good journalists better.” We educate journalists on the complex issues of the day and train them to use the latest reporting tools and techniques. The foundation recognizes and encourages excellence in journalism through its awards and fellowships.