Tuesday, May 10, 2022

Patient Advocacy at BioTechX 2022

WRAP is proud to be an organizing sponsor Patient Advocacy at BioTechX 2022. Join us as we support the patient voice at Europe's largest BioTech event! 




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.