CDG CARE is delighted to feature the first in a series of patient education webinars for our CDG/NGLY1 Community. In partnership with Putting Rare Diseases Patients First!®, a 501(c)(3) nonprofit charity, this first 2-hour, event is titled: The ABCs of Clinical Trials for the CDG/NGLY1 Community. REGISTRATION IS NOT REQUIRED, and you can watch the Webinar AIRING on YouTube at the published broadcase times specific below.
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July 26 - 31, 2021... We will be AIRING this
previously recorded, 2-hour educational event!
Who will this Program Benefit?
Designed for participants to hear from the experts about the latest approaches to treating and studying CDGs & NGLY1...
- Patients
- Parents
- Caregivers
- Healthcare Professionals
What You'll Learn
Your participation in this FREE 2-hour program will help pave the path to new treatments by increasing the understanding around the importance of:
- Natural History Studies,
- Clinical Trials,
- And the value patients bring to the process
The program consists of four, 20-minute sessions, each
provided by one of our expert speakers introduced below.
What to Expect
The program length is 2 hours and will AIR at the following times:
July 26 - 9am EDT / 2pm BST / 11pm AEST
July 27 - 12pm EDT / 5pm BST / 2am AEST (on July 28)
July 28 - 3pm EDT / 8pm BST / 5am AEST (on July 29)
July 29 - 7pm EDT / 12am BST / 9am AEST (on July 30)
July 30 - 9pm EDT / 2am BST / 11am AEST (on July 21)
July 31 - 7pm EDT / 12am BST / 9am AEST (on Aug 1)
Session One
Introduction to the drug development and regulatory process and steps to making new treatments available to the CDG/NGLY1 Community
Session Two
Learn about the benefits of participating in natural history studies & the different types of clinical trials, including how to find them
Session Three
Voice of the Patient in Clinical Trials - hear from a rare disease clinical trial patient and their experience through the process
Session Four
Building the Foundation for a Brighter Future Together - better data, better quality and better outcomes
Meet Our Speakers
Eva Morava-Kozicz, MD, PhD
Professor of Medical Genetics,
Mayo Clinic
Editor in Chief, Journal of Inherited Metabolic Disease
Andrew Edmondson, MD, PhD
Attending Physician,
Human Genetics & Metabolism,
Children's Hospital of Philadelphia
Christina Lam, MD
Attending Physician,
Seattle Children's Hospital
Assistant Professor, Department of Pediatrics, University of Washington School of Medicine
Lorna Speid, PhD, M.R.Pharm.S.
Founder & President, Putting Rare Diseases Patients First!
Stay in Touch
We encourage you to provide your information below to stay in touch and receive notices about future CDG CARE educational programs!
Thank you. We will be in touch again soon.
This program is made possible by a generous grant from Travere Therapeutics.