2023 Speakers
Suchismita Acharya, Chief Executive Officer, AyuVis Research
Alex Aimetti, Head Of Scientific Affairs, Marinus Pharmaceuticals
Paul Aliu, Head Global Governance Office, Novartis Chief Medical Office (CMO), Novartis
Simon Andrews, Senior Vice President, Head of Analytics, EVERSANA
Irina Antonijevic, Chief Medical Officer, EveryONE Medicines
Andrew Auruku, Chief Executive Officer, Rare Diseases Uganda-RDU
Ron Bartek, President, Director, And Founder, Friedreich's Ataxia Research Alliance
Norman Barton, Chair of the Clinical and Scientific Advisory Board, Oak Hill Bio
Scott Bergeron, Partner, Clinical Research, iTakeControl, a Red Nucleus Company
Alexandre Betourne, Scientific Director, Critical Path Institute
Sulagna Bhattacharya, Executive Officer & Co-Founder, NanoScope Technologies
Henric Bjarke, Chief Operating Officer, Inozyme
Wendy Borsari, Senior Manager of Patient Advocacy, Tenaya Therapeutics
Imein Bousnina, Program Director, US Regulatory Policy, Product Development Regulatory, Genentech
Marie Brace, Patient Access Liaison, Catalyst Pharmaceutical Partners
Julie Breneiser, Executive Director, Gorlin Syndrome Alliance
Larry Bressler, Head of Value and Market Access, Chiesi Global Rare Diseases
Matthias Breugelmans, CEO, Elastrin Therapeutics
Rusty Bromley, Director of Operations, AyuVis Research, Inc.
PJ Brooks, Health Scientist Administrator, NIH/NCATS
Robert Buchanan, Founder And Partner, Ventac Partners
Lynn Bush, Bioethicist-Developmental Research Scientist, Division of Genetics and Genomics, Pediatrics and Center for Bioethics, Harvard Medical School and Boston Children’s Hospital
Leonardo Calzetti, Co-founding Director & Sr. Partner, BlueDil International
Grant Castor, SVP Commercial Strategy & Operations, Sentynl Therapeutics
Ms Afshawn Chakamian, Director of Therapeutic Expertise, Center for Rare Diseases, DDS, ICON
Ms Anne-Sophie Chalandon, Head of Rare Diseases Global Public Affairs Rare Disease and ATMP Policy at Sanofi, Vice-Chair of the EFPIA OMP WG, Sanofi
Mr David Chapman, Vice President of Market Access, Agios Pharmaceuticals
Nitin Choudhary, Vice President, IPM.ai
Steven Cohen, Executive Director, Translational Medicine-Oncology & Internal Medicine, & Search & Evaluation-IM, Daiichi Sankyo
Ashley Cox, Senior Principal, Head of Europe | President HBA - London Chapter, EVERSANA
Carole Cramer, CEO and CoFounder, Biostrategies
Joslyn Crowe, Executive Director, National Niemann Pick Disease Foundation Inc
John F. Crowley, Chairman and Chief Executive Officer, Amicus Therapeutics Inc
Charlotte Damiano, Global Regulatory Partner, Life Sciences, Hogan Lovells
Michelle Davis, Executive Director, International Fibrodysplasia Ossificans Progressiva Association
Lisa Deschamps, Chief Executive Officer, AviadoBio
Chowdary Dondapati, Executive Director, US Head of Diagnostic Marketing, Precision Medicine, Bayer
Michael Dudley, Chief Executive Officer and Co-founder, TransCode Therapeutics
Sean Ekins, Chief Executive Officer, Collaborations Pharmaceuticals
Lisa Feng, Senior Director, Health Policy, Alexion – AstraZeneca Rare Disease
Holly Fernandez Lynch, Department of Medical Ethics & Health Policy, University of Pennsylvania
Sylvain Forget, Chief Executive Officer, BlueDil International
Al Freedman, Counseling Psychologist, Freedman Counseling Associates
Michele Gerber, Chief Medical Officer, Myeloid Therapeutics
Erin Griner, Assistant Director of Clinical Research Methodology, Worldwide Clinical Trials
Amy Grover, Director of Patient Advocacy, Catalyst Pharmaceutical Partners
Mr Maria Hadjidemetriou, Specialist Management Account, Medscheme Holdings (Pty) Ltd
Alaa Hamed, Global Head of Medical Affairs Rare Diseases, Sanofi
Molly Harper, Chief Business Officer, Synlogic
Rachel Harrison, Associate Director, Early Access Programs, Apellis Pharmaceuticals, Inc
Lauren Heiser, Business Development Director, Clinigen Group
Terry Hermiston, Chief Executive Officer, GLAdiator Biosciences and Coagulant Therapeutics, Inc
Sharon Hesterlee, Chief Research Officer, MDA
Kenneth Hobby, President, Cure SMA
Dwain Irvin, Chief Executive Officer, NovAccess Global, Inc
Hearn Jay Cho, Chief Medical Officer, Multiple Myeloma Research Foundation
Judith Kelleher-Andersson, President and Chief Executive Officer-Neuronascent, NeuroNascent Inc
Ken Kengatharan, Managing General Partner, Atheneos Ventures
Annie Kennedy, Chief of Policy, Advocacy, & Patient Engagement,, EveryLife Foundation for Rare Diseases
Maria Kirsch, General Manager, Patient Services, EVERSANA
Terri Klein, President And Chief Executive Officer, National M.P.S. Society
Bryan Kobel, Chief Executive Officer, TC Biopharm
Augusta Elizabeth Koroma, Chief Executive Officer, Sickle cell Intervention U.K
Kollet Koulianos, Vice President Payer Relations, The National Hemophilia Foundation
Walter Kowtoniuk, Venture Partner, Third Rock Ventures, LLC
Henrik Krook, Vice President Of Commercial Operations, Egetis Therapeutics AB
Larissa Lapteva, Associate Director, FDA
Cath Lawrence, VP, Rare Disease, Bionical Emas
Del Lebel, Head, US Government Affairs and Policy, Alexion – AstraZeneca Rare Disease
Connie Lee, President And Chief Executive Officer, Alliance to Cure Cavernous Malformations
Naomi Litchfield, Global Patient Advocacy Lead, Bionical Emas
Jeff Livingstone, Chief Executive Officer, Igia Pharmaceuticals
Robert Long, Executive Director, Uplifting Athletes
Mark Manfredi, CEO, Ikena Oncology
Peter Marks, Director, Center For Biologics Evaluation And Research (CBER), U.S. Food and Drug Administration
Silas Martin, Senior Director, Market Access Scientific And External Strategy, Johnson & Johnson
Paolo Martini, Chief Scientific Officer Rare Diseases, Hematology and External R&D, Moderna, Inc.
Cara Mayfield, VP, Patient Advocacy and Corporate Communications, Homology Medicines
Maria Mccaffrey, Vice President Country Regulatory and Quality, Alexion – AstraZeneca Rare Disease
Kim McClellan, President, Recurrent Respiratory Papillomatosis Foundation
Susan Mccune, Vice President, Pediatrics & Clinical Pharmacology, Thermo Fisher Scientific
Jennifer McNary, Founder, One Rare
Christine McSherry, Executive Director, Strategic Collaborations, The Emmes Company, LLC
Tsveta Milanova, Chief Commercial Officer, Agios
Timothy Miller, Global Vice President, PPD, part of Thermo Fisher Scientific
Samarendra Mohanty, Founder-President, Chief Scientific Officer, nanoscope therapeutics
Mona Moonis, NA Brand Lead, Rare Disease, Kyowa Kirin
Annette Muaghan, Co-Founder And Chief Executive Officer, KBG Foundation
Alexander Natz, Secretary General, European Confederation of Pharmaceutical Entrepreneurs (Belgium)
George Naumov, Chief Business Officer, RS Oncology
Adora Ndu, Chief Regulatory and interim Legal Officer, BridgeBio Gene Therapy
Galina Nesterova, Executive Medical Director- Rare Diseases & Pediatrics, PPD, part of Thermo Fisher Scientific
Victoria Niklas, Chief Medical Officer, Oak Hill Bio
Lisa Padilla, Chief Executive Officer, Beryl Therapeutics Inc
Kinnari Patel, President & COO, Rocket Pharma
Melissa Penn, Director Patient Engagement Research & Development, Bayer
Richie Pfeiffer, Senior Director- Decentralized Clinical Trials, PPD, part of Thermo Fisher Scientific
Damon Race, President & CEO, GeneVentiv Therapeutics, Inc
Paula Ragan, President and CEO, X4 Pharmaceuticals
Amy Raymond, Senior Director, Therapeutic Strategy Lead, Rare Diseases, Worldwide Clinical Trials
Frank Rivera, President, Stronger Than Sarcoidosis
Priscilla Rodriguez, Diversity Inclusion Advocacy Manager, EveryLife Foundation for Rare Diseases
Kacper Rucinski, Delegate, SMA Europe / Founder, Member of Strategy Board, SMA Foundation Poland, SMA Europe (Germany) / SMA Foundation (Poland)
Christopher Rudolf, Chief Executive Officer and Founder, volv global
Sandhya Sanduja, Acting Branch Chief, Pharmacology/Toxicology Branch1, Office of Tissues and Advanced Therapies, CBER,, FDA
Jonathan Schwartz, Chief Medical Officer, Rocket Pharma
Denise Scots Knight, Chief Executive Officer, Mereo Biopharma
Albert Seymour, Chief Scientific Officer, Homology Medicines
Nilomi Shah, Director of Medical Affairs Lead, Lexeo Therapeutics
Pallavi Sharma, Senior Manager, Scientific Project And Pharmaceutical Development, Adverum Biotechnologies
Jerry Shen, CEO, Co-Founder, AceLink Therapeutics, Inc
Tricha Shivas, Chief Strategy Officer, Foundation for Sarcoidosis Research
Wen Chyi Shyu, Chief Executive Officer, BRIM Biotechnology, Inc.
Ms Amy Simon, Chief Medical Officer, Beam Therapeutics
Nick Sireau, Chair and Chief Executive Officer, AKU Society
Jayson Slotnik, Partner, Health Policy Strategies, LLC
Tom Smith, Project Development Specialist, Durbin
Mr Kim Smith-Whitley, Executive Vice President and Head of Research and Development, Global Blood Therapeutics, Inc.
Scott Snyder, Chief Digital Officer, EVERSANA
Kim Stephens, President, Project Alive
Dean Suhr, President, MLD Foundation
Jamie Sullivan, Director of Public Policy, EveryLife Foundation for Rare Diseases
Marshall Summar, Director, Rare Disease Institute, Children's National Medical Center
Mitra Tavakkoli, Vice President; Clinical Development, 4DMT
Ulrich Thienel, Chief Executive Officer, ReAlta Life Sciences
Mark Trusheim, Strategic Director, MIT NEWDIGS
Andrew Udell, President of North America, Commercial, Calliditas Therapeutics
Robert-Jan Van Son, General Manager Germany, BeNeLux and Nordic,, Orphalan
Atul Varadhachary, Managing Partner, Fannin Innovation Studio
Lavni Varyani, Founder, Pharma BP DMCC
Geeta Vemuri, Managing Partner, Agent Capital
Daniel Wainstock, Law student, PUC-Rio
Terence Walts, Chief Executive Officer, Cambium Medical Technologies
Jingsong Wang, President & Chief Executive Officer, Harbour Biomed
Mary Wang, Programme Director, Rare Diseases International
Ryan Witt, Chief Business Officer, Spinogenix
Durhane Wong-Rieger, President, Canadian Organization for Rare Disorders
Lisa Yañez, Chief Executive Officer, Aerami Therapeutics
David Young, Chief Executive Officer, Processa Pharmaceuticals, Inc.
Ms Jennifer Young, Senior Director and Lead, Policy and Public Affairs Emerging Asia, Pfizer
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