MassBio® Rare Disease Day to Recognize the Research Being Done in Massachusetts to Treat and Cure Rare Disease

Feb 14, 2020

The event raises awareness of rare diseases and their impact on the lives of patients and caretakers

What: MassBio’s 2020 Rare Disease Day will call attention to the public health issues associate with rare diseases, which affect roughly 30 million Americans and countless others around the world. This year, the agenda will feature two panels. The first will present the patient perspective on how they’ve turned their diagnosis into their life’s work; and the second will offer the industry’s perspective on how researchers and providers are not only tailoring a therapy for a specific patient, but also the entire patient experience.

When: February 28, 2020 at 9:30 am to 2:00 pm.

Where: Omni Parker House, 60 School Street, Boston, MA 02108

Who: MassBio President and CEO Bob Coughlin and Katie Brandt, Director of Caregiver Support Services and Public Relations Frontotemporal Disorders Unit, MGH, will deliver the Welcome Remarks and will be joined by:

  • Patient Perspectives: Diagnosis to Empowerment
    • Lexi Pappas, Advocate, FSHD
    • Seth Rothberg, Co-Founder, Our Odyssey
    • Shauna Sperou, Advocate, Rothmund-Thomson Syndrome
  • Industry Perspectives: Working with Zebras One Stripe at a Time
    • Annemarie Crivelli, Chief Experience Officer, Cambridge BioMarketing
    • Robert Gould, President and CEO, Fulcrum Therapeutics
    • Kate Haviland, COO, Blueprint Medicines
    • Paula Ragan, CEO, X4 Pharmaceuticals

View the agenda here.

Interested media can register for free by contacting Jennifer Nason.

Sponsors of the event include: Agios, Alexion, AMRYT Pharma, Appellis, Astellas, Biogen, bluebird bio, Blueprint Medicines, Cambridge BioMarketing, Charles River Laboratories, FUJIFILM Diosynth, Ipsen, Moderna, PTC Therapeutics, Ra Pharma, Sanofi Genzyme, Sarepta Therapeutics, Sobi, Stratacuity, Takeda, UniQure, Vertex Pharmaceuticals, Voyager Therapeutics.

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