Rare Disease Clinical Trials: Being Informed

Gain a better understanding of rare disease clinical trials by listening to patient advocates and health care providers. Learn about the process, questions to ask and how to be informed. Moderated by Christian Rubio, Vice President of Strategic Advancement, Global Genes.

Read the article brief based on the webinar here.

View the companion infographic here.

Read our Medical Hero Spotlight Article: Jenn McNary, Three Sons, Three Rare Diseases & Clinical Trials here.

Read our December Clinical Trials Supplement Article: One Family’s Journey Through Chronic Illness & Clinical Trials here.

About the Panelists

Click on image for biography

Christian Rubio WOW1

Christian Rubio
VP of Strategic Advancement,
Global Genes

dr. dastgir wow1

Dr. Jahannaz Dastgir DO

Director, Pediatric Neuromuscular Program,
Goryeb Children’s Hospital

Melanie Havert WOW1

Melanie Havert

Project Manager,
Rare Patient Voice, LLC

Jennifer McNary wow1

Jenn McNary

Founder & Patient Advocate,
One Rare

Stephanie Loomer Headshot wow1

Stephanie Loomer

Project Manager,

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