2025 ZTTK Global Community Conference
Welcome to day 1
Ada Lio, Executive Director, ZTTK SON-Shine Foundation
Keynote: From Patient to Change-Maker: Hope in Action for Ultra-Rare Disease Treatments
Neena Nizar, PhD, Patient Advocacy Leader, The Jansen's Foundation, ICON
Intro to Genetics and Research Basics
Raymond Belanger Deloge, MS, CGC, Translational Genomic Medicine Specialist, RSZ TNC, Boston Children's Hospital
ZTTK Syndrome: What We Know Today
Erin (Eun-Young) Ahn, PhD, Lead ZTTK Researcher, University of Alabama at Birmingham
Fueling Research with Patient Data
Elli Brimble, MSc, MS, CGC, Head of Clinical Strategy, Citizen Health
Making Drug Development Work for Patients through Patient-Biotech Partnerships
Richard Novak, PhD, CEO & Co-Founder of Unravel Biosciences
Research Panel: Rare Disease Research and Future Opportunities
Erin (Eun-Young) Ahn, PhD, University of Alabama at Birmingham, Elli Brimble, MSc, MS, CGC, Citizen Health, Maya Chopra, MBBS, FRACP, Boston Children's Hospital, Richard Novak, PhD, Unravel Biosciences, Tim Yu, MD, PhD, Boston Children's Hospital, Moderated by Nathan Guo, ZTTK Dad & Patient Advocate
Day 2 Opening Remarks
Shannon Boyle, President, ZTTK SON-Shine Foundation
Centering Your Good: Balance hopes and expectations
Jennifer Siedman, MEd, Courageous Parents Network
Parent Panel: Navigating the ZTTK journey
ZTTK Families
Day 2 Closing Remarks
Kerry Tirrell, Vice President, ZTTK SON-Shine Foundation
Thank you for joining! Stay tuned for our next conference!
