The Patient Voice in Rare Disease Research: Listening to patients and families is more important than ever

In rare disease research, patients and families are taking a seat at the table, providing real-life perspectives that are helping to shape the development of new therapies. Sponsors, regulatory agencies, payers and health care providers alike are seeing the value of this increasing patient involvement.

Join IQVIA women leaders Ali Smyth, PhD, Strategy Director, Pediatric and Rare Disease Center of Excellence and Sarah Kromrey, Therapeutic Strategy Director, Internal Medicine, IQVIA Biotech on this roundtable to discuss the importance of the patient voice in rare disease development - now and in the future.

Learn how rare disease patients and families have been impacted by the pandemic, and why listening to their voice now is more important than ever. Register now!

3 Key Takeaways
  • Recognize the value of including the rare disease patient’s perspective in clinical research
  • Understand the impact of COVID-19 pandemic on rare disease patients and families
  • Discover new ways to make clinical trials more patient centric
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Sarah Kromrey, PhD

Sarah Kromrey, PhD

Therapeutic Strategy Director, Internal Medicine, IQVIA Biotech

Dr. Kromrey is a strategic consultant for sponsors as well as internal liaison across functional areas in IQVIA Biotech’s Internal Medicine division. Her main focus is supporting innovative strategy development as it relates to the operational approaches for new studies and the inclusion of IQVIA’s pioneering solutions. She holds a PhD in Neuroscience from Wake Forest University.

Ali Smyth, PhD

Ali Smyth, PhD

Strategy Director, Pediatric and Rare Disease Center of Excellence, IQVIA

Ali supports rare disease programs across IQVIA and drives collaborations with rare disease patients and families to bring their voices into clinical studies and programs. Ali has worked in rare disease and oncology for 12 years in a variety of roles in patient and site engagement, medical and scientific communications, investor relations and clinical development planning.

Arsalan Arif

arsalan arif

Founder & Publisher, Endpoints News

Arsalan Arif is a news media entrepreneur who set out in 2015 to build his vision of an independent biotech news company at Endpoints News.