Webinar Series: Navigating Rare Disease & Clinical Research - Every Patient Matters
What exactly is clinical research, and what does it mean to participate in a clinical trial? An informative series for patients, parents, & caregivers.
Register for Part 3 of our FREE educational webinar series on
Wednesday, November 10th from 12PM – 1PM EDT
Please scroll down to learn about Parts 1 and 2 of this informative webinar series.
PART 3: Wednesday, November 10th, from 12PM – 1PM EDT
- Rare Disease Clinical Trials: After Participation, Paying It Forward
Hear from 4-5 different clinical trial participants on how they chose to become advocates to share their experiences in different ways in order to help others through the clinical trials journey and “pay it forward”.
Webinar Moderated by Britta Dornan, Senior Director of Communications & Marketing, EveryLife Foundation for Rare Diseases.
PART 1: Rare Disease Clinical Trials: Being Informed, Wednesday, March 10th from 12PM – 1PM EDT
Moderated by Christian Rubio, Vice President of Strategic Advancement, Global Genes
Webinar Recording Coming Soon
VP of Strategic Advancement,
Dr. Jahannaz Dastgir, DO
Director, Pediatric Neuromuscular Program,
Goryeb Children’s Hospital
Rare Patient Voice, LLC
Founder & Patient Advocate,
PART 2: Wednesday, June 9th from 12PM – 1PM EST
- Rare Disease Clinical Trials: How to Prepare for When the Clinical Trial Ends
Learn about clinical trials, what it means to participate, and what happens when the clinical trial is completed
Moderator: Marsha Lanes, Genetic Counselor/Medical Editor, NORD (National Organization for Rare Disorders)
Dr. Tracy Dixon-Salazar,
Richie Kahn, MPH
Operating Board Member,