MassBio to Host 3rd Annual Patient Advocacy Summit

Sep 23, 2016

Annual event brings together industry leaders, patients, patient advocates

CAMBRIDGE, MA (September 23, 2016) – MassBio will host the 3rd Annual Patient Advocacy Summit on Wednesday, September 28th at Novartis in Cambridge, Massachusetts.

The MassBio Patient Advocacy Summit brings industry leaders together with patients, patient advocates and other stakeholders to examine ways in which life sciences companies can more fully incorporate the patient voice into the work they do— not just approaching regulatory applications or at commercialization, but throughout the drug development cycle.

Lisa Genova, the author of the New York Times bestselling novels Still Alice, Left Neglected, Love Anthony, and Inside the O'Briens, will deliver the event keynote. Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University. She is acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science.

This year’s event, subtitled Sharing Our Stories: Building a Patient-Centered Ecosystem, will also feature five guest speakers who will take the stage to share their stories, highlighting their experiences and insights from patient perspectives. The full agenda is available online here.

Speakers include:

  • Kenneth Anderson, Program Director, Jerome Lipper Multiple Myeloma Center and LeBow Institute for Myeloma Therapeutics, Dana-Farber Cancer Institute
  • Kathy Biberstein, Executive Vice President, Chief Administrative Officer, Alkermes
  • Robert K. Coughlin, President & CEO, MassBio
  • Greg Erman, President & CEO, EmpiraMed
  • Annie Ganot, Head of Patient Advocacy, Solid Biosciences
  • Heather Gartman, Managing Director, inVentiv Health PR Group (Washington, D.C.); Lead, inVentiv Patient Engagement and Global Clinical Trial Recruitment
  • Lisa Genova, neuroscientist & author of NYT bestsellers Still Alice & Inside the O'Briens
  • Alan Gilstrap, Executive Director, Advocacy & Policy, Akcea
  • Paul Giusti, President & CEO, Multiple Myeloma Research Foundation
  • Kathy Gram, Vice President of Patient Advocacy, Snow Companies
  • Claudia Hirawat, Chair, International Circle of Ambassadors, EURORDIS
  • Kenneth Hobby, President, Cure SMA
  • Kara Malcolm, Clinical Scientist, Translational Medicine, Novartis
  • Gillian Mullins, Director of Alliance Development, Biogen
  • Jan Nielsen, Division President, Cardinal Health/Sonexus
  • Michele Rhee, Global and R&D Patient Advocacy, Takeda Oncology
  • Henk Schuring, Vice President and Head of Rare Neurological Diseases, Sanofi Genzyme
  • Tracy Seckler, Director, Charley's Fund
  • Ellie Strock, Director of US Medical Affairs, Voluntis
  • Raymond L. Wezik, Global Advocacy Executive, International Myeloma Foundation

Sponsors for the MassBio Patient Advocacy Summit include Shire, Alkermes, Biogen, inVentiv Health, Sanofi Genzyme, Takeda, bluebird bio, Bristol-Myers Squibb, Sarepta Therapeutics, Vertex, Idera Pharmaceuticals, STAT, Voyager Therapeutics, WAVE Life Sciences and host Novartis Institutes for BioMedical Research.

Event is registration is available online here.

Interested media must register in advance by contacting Jessica Roche Weinstein at or 617-674-5146.


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