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Pharmacovigilance and Risk Management Strategies Conference

NEW! The 2019 meeting will be a full three days, allowing maximum learning opportunities!


Session 4: Rare Disease II: The Patient Story

Session Chair(s)

Mariette  Boerstoel-Streefland, MD, MBA, MS

Mariette Boerstoel-Streefland, MD, MBA, MS

  • Senior Vice President Global Drug Safety
  • Alexion Pharmaceuticals, Inc., United States
In this follow-on session from the previous one we are looking at rare disease from the patient’s perspective. A patient and their caregiver will each share their perspectives on the journey of living with a rare disease, and provide insights in the challenges of getting diagnosed, finding and getting access to the right treatment, accepting uncertainty about benefit and risk, and dealing with potential side effects. This session should allow the audience to switch lenses and step outside the shoes of the safety professional into that of a patient and their caregiver.

Speaker(s)

Donna  Kolp

Rare Disease II: The Patient Story

Donna Kolp

  • Social Media Director and Board Member
  • The Atypical HUS Foundation, United States
Bethany  Lovegrove

Rare Disease II: The Patient Story

Bethany Lovegrove

  • United States