2026 Speakers
June 9 - 11, 2026
Boston Convention & Exhibition Center
Mackenzie Abramson, MPH, BCPA, Patient Advocate
Rebecca Ahrens-Nicklas, MD, PhD, Assistant Professor of Pediatrics Director, Gene Therapy for Inherited Metabolic Disorders Frontier Program, Children's Hospital Of Philadelphia
Lynn Albizo, Chief Public Policy Officer, Immune Deficiency Foundation
Annette Bakker, CEO, Childrens Tumor Foundation
Anny Bedard, President, Egetis Therapeutics US
Hourinaz Behesti, Founder & CEO, Hebbian Bio
Christine Brennan, Managing Director, Vertex Ventures HC
P.J. Brooks, Deputy Director, Division of Rare Diseases Research Innovation, NIH/NCATS
Jonathan Brudvig, Senior Director, Scientific Evidence, Amicus Therapeutics
Cynthia Cassandro, Vice President, Patient Advoacy, Vigil Neuroscience
Jessica Cerullo, Senior Director, Patient Advocacy & Disease States Initiatives, Pierre Fabre Pharmaceuticals
James Chambers, Professor, Tufts Medical Center
Jason Colquitt, Chief Executive Officer, Across Healthcare
Anne Corvelle, President, Board of Directors, FD/MAS Alliance
Rumi Desai, Director, Global Regulatory Strategy, Amgen, Inc.
Mr. Michael Eging, Executive Director, Rare Access Action Project
Lisa Emrick, Medical Director, Neurogenetics, Baylor College of Medicine
Wendy Erler, Senior Vice President, Patient Affairs, Sarepta Therapeutics
Djordje Filipovic, Chief Executive Officer, AB2 Bio Ltd.
Amanda Forys, Managing Partner, Magnolia Market Access
Karen Frascello, Senior Director, Medical Affairs, Alnylam Pharmaceuticals
Albert Freedman, Counseling Psychologist / Rare Dad, Rarecounseling.com
Chris Garabedian, Portfolio Manager, Venture, Perceptive Advisors
Federico Goodsaid, SVP Regulatory, Ariana Pharma
Sonit Handa, Member, Board of Directors, The Josselyn Center
Sonit Handa, CEO & Founder, Biovance Consulting
Rachel Harrison, Director, Expanded Access Program, argenx
Alex Hersham, Co-Founder, Nonsense Tx
Ms. Elise Hoover, Vice President of Research, Foundation for Sarcoidosis Research
Neil Inhaber, Head, Marketed Products, Global Medical, Takeda
Debra Jennings, Head of Patient Services Operations, North America, Kyowa Kirin
Richie Kahn, Co-Founder & COO, Canary Advisors
Graeme Ladds, CEO, PharSafer
Patroski Lawson, Co-founder, The Just Society
Kimberly LeBlanc, Director, UDN Data Management Coordinating Center, Harvard Medical School, Harvard Medical School
Julianna LeMieux, Deputy Editor in Chief, Genetic Engineering & Biotechnology News
Robert Long, Executive Director, Uplifting Athletes
Peng Lu, Chief Medical Officer, Pharvaris
Fabiana Marzabal, Sr Director Forecasting, Analytics and Insights, Viridian Therapeutics
Maurizio Mazzi, Senior Associate Director, Patient Advocacy & Professional Relations, Böhringer Ingelheim
Katie McCarthy, SVP & Practice Lead, Clinical & Regulatory, Lumanity, Inc.
Michelle McClure, Public Policy Director, American College of Medical Genetics and Genomics
Jennifer McNary, Co-Founder, Canary Advisors
Kiran Musunuru, M.D., Ph.D., Barry J. Gertz Professor for Translational Research, Perelman School of Medicine University of Pennsylvania
Brian Nappi, SVP, Strategy, Saol Therapeutics
James Oakley, CEO, Keep Me Breathing
Francis Pang, SVP Global Market Access and International Geographic Expansion, Orchard Therapeutics
Dave Pearce, Chair, International Rare Diseases Research Consortium (IRDiRC)
Dorian Readnour, Vice President, International, Sarepta Therapeutics
Mrs. Stephanie Rider, Director, Payor Relations & Policy, Immune Deficiency Foundation
Frank Rivera, President, Stronger Than Sarcoidosis
Luis Rojas, Chief Clinical Development Officer, Polaryx Therapeutics
Jayson Slotnik, Partner, Health Policy Strategies, LLC
Devyn Smith, CEO, Arbor Biotechnologies
Charlene Son Rigby, Chief Executive Officer, Global Genes
Frank Sorgi, President and Chief Executive Officer, FLAG Therapeutics
Steve St. Onge, SVP - Corporate Development, Clarametyx Biosciences
Dionne Stalling, Executive Director, Rare And Black
Ying Tam, Chief Scientific Officer, Acuitas Therapeutics
Chelsea Trengrove, CEO and Cofounder, Neoclease
Fyodor Urnov, Scientific Director, Innovative Genomics Institute, Professor, Department of Molecular & Cell Biology, University of California at Berkeley
Daniel Wainstock, Researcher and Rare Disease Advocate, PUC-Rio
Ms Yael Weiss, Chief Executive Officer, Mahzi Therapeutics
Durhane Wong-Rieger, President, Chief Executive Officer, Canadian Organisation for Rare Disorder & Rare Diseases International
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