MassBio Hosts 4th Annual Patient Advocacy Summit

Oct 24, 2017

Event convenes industry leaders and patient advocates to champion patient voice in drug development

What: MassBio’s 4th annual Patient Advocacy Summit brings together industry leaders, 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. The event will include panel discussions, case study presentations (spotlighting industry/patient partnerships), a keynote address and awards ceremony, as well as a networking breakfast, lunch and cocktail reception. 

When: Friday, October 27, 2017 from 8am – 4:30pm ET

Where: Merck, 33 Avenue Louis Pasteur, Boston, MA 02115

Speakers: Lee Cooper, founder of The Institute for Genetic Disease Prevention, will keynote the event and share his story – how he was diagnosed with a rare genetic disease and why he advocates for a treat-and-prevent approach (including genetic testing) to wipe out diseases. Other speakers include:

  • Jim Baker, Vice President, Corporate Affairs, Blueprint Medicines
  • Liz Lewis, Chief Counsel & Head of Patient Advocacy, Takeda Oncology
  • Lora Marden, Interim Head of Patient Advocacy & Engagement, Alnylam
  • Kate Tighe, Associate Director, Global Patient Advocacy – Rare Diseases, Sanofi Genzyme
  • Anna Hehenberger, General Counsel, Lyfebulb
  • Carl Morris, Ph.D., Chief Scientific Officer, Solid Biosciences
  • Jim Palma, Executive Director, TargetCancer
  • Stuart Siedman, Director & Treasurer, Sanfilippo Research Foundation
  • Michael Forte, Director, Trial Execution Solutions, KCR
  • Jennifer Panagoulias, VP of Regulatory Affairs, WAVE Life Sciences
  • Laura Sandler, Head of Clinical Operations, CRISPR Therapeutics
  • Jen Watts, Associate Director, Novartis Institutes for BioMedical Research
  • Michele Rhee, Head, Patient Affairs, Enzyvant
  • Molly Harper, Vice President, Global Commercial Development, Akcea Therapeutics
  • Lilly Stairs, Head of Patient Advocacy, Clara Health
  • Meg Wood, Eastern Director of Development, CureDuchenne
  • Kathy Gram, Vice President, Patient Advocacy, Snow Companies
  • Albert Almada, Founder, Strength, Science, & Stories of Inspiration
  • Rich Kennedy, Founder & President, The Angel Fund for ALS Research
  • Sharif Tabebordbar, Founder, Strength, Science, & Stories of Inspiration
  • Wendy Erler, Vice President, Patient Advocacy & Commercial Market Insights, WAVE Life Sciences

Sponsors include: Biogen, Sanofi Genzyme, Vertex, Bluebird bio, Alkermes, Shire, Sarepta and WAVE Life Sciences. 

Register for the event here and see the full agenda here.

Interested media can register for free by contacting Jennifer Nason at  

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