Renowned Expert Speakers
18th Orphan Drugs & Rare Diseases Global Congress 2022 Americas
- Kelly Altman, Sr. Director, Medical Affairs, InformedDNA
- Alan J. Balch, Chief Executive Officer, Patient Advocate Foundation
- Tara J. Britt, Founder and President, Rare Disease Innovations Institute, Inc.
- Raquel Cabo, Vice President, Global Commercial Strategy, Ovid Therapeutics
- Ashley Cannon, Clinical Program Manager, Life Sciences, InformedDNA
- Kathleen Coolidge, Patient Advocacy, Pulse Infoframe
- Robert Donnell, Executive Vice President, Medicines Access, Smartway Pharma
- Wendy Erler, Head of Patient Experience and Insights, Alexion Pharmaceuticals, Inc.
- Jodie Sherman Gillon , SVP Corporate Affairs & Patient Advocacy, Peptilogics
- Jeremy Griffin, Executive Director, New York City Hemophilia Chapter
- Shane Hegarty, Chief Scientific Officer & Co-Founder, AXONIS Therapeutics, Inc.
- Eugean Jiwanmall, Sr Research Analyst, Independence Blue Cross
- John Lagus, Executive VP Business Development, Tanner Pharma Group
- Sanjeev Luther, President, CEO & Chairman of the Board, Cornerstone Pharmaceuticals
- Christof Marré, Principal, CMH Consulting, former VP Global Marketing, EMD Serono
- Jennifer McNary, Exec. Director, Head, Patient Advocacy & Engagement, Fulcrum Therapeutics
- Craig Martin, CEO, Global Genes, President, Rithm Health
- Neena Nizar, President & Founder, The Jansens Foundation
- May Orfali, EVP and Chief Medical Officer, Sigilon Therapeutics, Inc.
- Frank Rivera, Co-Founder/President, Stronger Than Sarcoidosis
- Johanna Rossell, Chief Commerical Officer, Enzyvan
- Paul Strijbos, Advanced Neurotechnology Innovation Leader, Roche
- Nicole Sweeny, Chief Commercial Officer, Praxis Precision Medicines
- Magali Taiel, M.D., Chief Medical Officer, GenSight-Biologics
- Simu Thomas, Vice President & Global Head HEOR, Alexion, AstraZeneca Rare Disease
- Tiina Urv, Program Director, Office of Rare Diseases Research, NCATS
- Rogerio Vivaldi MD, President, CEO, Sigilon Therapeutics Inc
- Christine Von Raesfeld, Founder & CEO, People with Empathy
- Monica L Weldon, President/CEO/Founder, SYNGAP1 Foundation
Rogerio Vivaldi
President and Chief Executive Officer, Sigilon Therapeutics Inc.
Sonal Bhatia
Chief Medical Officer, Rare Disease, Pfizer
Andrea C. Furia-Helms, M.P.H.
Director, Patient Affairs Staff, Office of Clinical Policy and Programs, Office of the Commissioner, U.S. Food and Drug Administration
Paul Strijbos
Advanced Neurotechnology Innovation Leader Roche
Christine Von Raesfeld
Founder & CEO, People with Empathy
Ashley Cannon,
Clinical Program Manager, Life Sciences, InformedDNA
Kelly Athman
Sr. Director, Medical Affairs, InformedDNA
May Orfali
EVP and Chief Medical Officer, Sigilon Therapeutics, Inc.
Monica L Weldon
President/CEO/Founder Bridge the Gap - SYNGAP Education and Research Foundation
Neena Neezar
Founder & Executive Director, Jansen's Foundation
Jodie Sherman Gillon
SVP Corporate Affairs & Patient Advocacy at Peptilogics
Craig Martin
CEO, Global Genes
Frank Rivera
Co-Founder/President- Stronger Than Sarcoidosis
Sanjeev Luther
President, CEO & Chairman of the Board, Cornerstone Pharmaceuticals
Alan J. Balch, PhD
CEO, National Patient Advocate Foundation
Simu Thomas PhD,
Vice President, Global Head HEOR, Alexion Pharmaceuticals
Magali Taiel, M.D.,
Chief Medical Officer , GenSight-Biologics
Tara J. Britt
Founder and President, Rare Disease Innovations Institute, Inc.
Robert Donnell
Executive Vice President – Medicines Access, Smartway Pharma, a leading provider of Early / Expanded Access Programs (EAP).
Wendy Erler
Vice President, Patient Experience, STAR and Advocacy, Alexion Pharmaceuticals
Jennifer McNary
Exec. Director, Head, Patient Advocacy & Engagement, Fulcrum Therapeutics
Khrystal Davis
Founder & President, Texas Rare Alliance, Advisory Member, Texas Newborn Screening
Kathleen Coolidge,
Patient Advocacy, Pulse Infoframe
Raquel Cabo
Vice President, Global Commercial Strategy, Ovid Therapeutics
Jeremy Griffin
Executive Director, New York City Hemophilia Chapter
Christof Marré
Principal, CMH Consulting, former VP of Global Marketing in Neurology & Immunology, EMD Serono
Shane Hegarty
Chief Scientific Officer & Co-Founder, AXONIS Therapeutics, Inc
Mike Page
Vice President, Global Regulatory Affairs Development Strategy, Alexion Pharmaceuticals.
David A Pearce, PhD
President of Innovation, Research, & World Clinic, Sanford Health
Scott Dorfman
President and CEO, Odylia Therapeutics
Kristin Smedley
President, Curing Retinal Blindness Foundation
Karmen Trzupek
Director, Clinical Trial Services, InformedDNA
John Lagus
Executive Vice President, Business Development, Tanner Pharma Group
Tiina Urv
Program Director, Office of Rare Diseases Research, NCATS
Nicole Sweeny
Chief Commercial Officer, Praxis Precision Medicines
Patricia Weltin
CEO and Founder of the Beyond the Diagnosis.
Johanna Rossell
Chief Commercial Officer, Enzyvant
Eugean Jiwanmall
Senior Research Analyst for Medical Policy & Technology Evaluation, Independence Blue Cross
Stuart Siedman
Global Head, Patient Advocacy ‑ Rare Disease, Chiesi USA, Inc.*
Alison Schecter
President of R&D, Axcella Therapeutics