Current Speakers for this section are:
- Dr Wendy Chung - Columbia University CARES for Kids, DHREAMS, KidsFirst Database
- Dr Dick Tibboel - Erasmus MC, ICU
- Dr. Augusto Zani - Zani Lab, University of Toronto
- Dawn Ireland - Founder of CDH International, Patient Registry creator, global Patient Advocate working in 84 countries
- Luke Rosen - Founder of KIF1A.ORG, a nonprofit organization working to rapidly discover treatment for KIF1A Associated Neurological Disorder. Senior Vice President, Accelerated Development & Community Engagement at Ovid Therapeutics.
- Caryl Harris - Co-Founder & Executive Director, Avery's Hope, Patient Ambassador for Illumina, Former member of Rare Advocacy Movement
- Terri Ellsworth - Professional Rare Disease KOL, Patient Advocate Thought Leader, Consultant, Public Speaker
- Sean Gordon - "After being diagnosed with an adult onset rare disease, I have founded www.rarefundingteam.com bringing together communications professionals and rare disease organizations on a pro bono basis. I bring over two decades of experience in sales & marketing of technology products."
- Dr Neena Nizer - Executive Director of The Jansen's Foundation. Patient and mother to two superheroes with Jansen's Metaphyseal Chondrodysplasia. Working on a cure for JMC.
- Taylor Kane - Community Engagement Manager at AllStripes, Founder and Executive Director at Remember The Girls, Rare disease speaker, advocate, consultant, and author
- David Rose - Business Development at Rare Revolution Magazine. Ultra-Rare Disease Patient Speaker. Trustee for Mitrofanoff Support.
- Marni B. Cartelli - Patient, Advocate, Danny’s Dose Alliance
- Meghan Rauen LCMHCA/NCC - Founder and President, Global Gastroschisis Foundation. " I have extensive education and research in the medical communications, counseling, trauma, religion and medicine, patient communications, and bioethics/medical ethics."
- Eden Lord - Founder & CEO at The Dash Alliance, Creator of the first virtual rare disease events, "The Rare Fair", "24 Hours of Rare" & "Rare 72", a collaborative model for rare disease solutions. Rare Disease Mom & Patient
- Jeff Lord - Chief Technology Officer (CTO) My City Med, rare disease dad
- Monica Weldon - Son 1 of 6 diagnosed globally in 2012 with SYNGAP1, rare disease advocate, Founder, Biotech Investor @syngap1_Fnd VAMO contributor @pharmaboardroom
- Onno Faber - TedEx speaker, scientist, CEO Rarebase, Founder of AllStripes, entrepreneur, keynote speaker, author, patient advocate, angel investor
- Jason Miller - Patient Registry Administrator, CDH International
- Carolyn Dumond - Associate Director, Global Patient Advocacy at Illumina
- Carie Chester - Lead Manager, Exam Operations & ServicesLead Manager, Exam Operations & Services AICPA
- Thomas Hach, Executive Director, Patient Engagement Cardiovascular,
Renal & Metabolism, Novartis
- Bradlay Pryde, COO, One Three Biotech
If you are interested in speaking, please email us.
