Incorporating Patient Voices and Priorities in Genomic Testing, Research and Treatment Development

Description

This presentation will identify touchpoints in the diagnosis and drug-development continuum where early/systematic insight into patient perspectives can help accelerate availability of new treatments, differentiate an asset, and add reputational value. Industry, payers, regulators, and investors increasingly seek patient perspective to de-risk their decisions; and patients themselves are keen to partner.

 

Level of Instruction
Basic - Entry level; no prior knowledge of subject necessary
 

Learning Objectives

1. Assess potentially under-appreciated areas and opportunities where prioritized patient insights can inform and de-risk drug development.
2. Identify fit-for-purpose tactics to obtain timely patient perspective, mindful of potential legal/compliance/ethical concerns.
3. Design a basic approach to systematically incorporate and integrate the patient perspective into your work, and how to make its impact more visible.

Course summary

Available credit: 
  • 0.10 NSGC CEU
Course opens: 
04/16/2026
Course expires: 
04/16/2028
Cost:
$0.00

Presenter: Nan Doyle, MS, MS, LCGC

Genetic Counselor and Patient Engagement Catalyst

Nan Doyle is a patient engagement catalyst who helps emerging companies embed patient perspective into every nook and cranny of rare-disease drug discovery and development, especially when new gene-modification modalities are involved. She has a passion to strengthen access to diagnosis and treatment for people living with rare genetic conditions. 

Most recently, Nan established and built the Rare Disease Patient Engagement function for Takeda Pharmaceuticals. She has held innovative, successful roles in multiple areas of drug development, with bright lights in rare disease medicine including Alnylam, Genzyme, Massachusetts General Hospital, the Boston Museum of Science, Parexel, and Harvard Medical School. 

Nan is also a board-certified genetic counselor, where she developed front-line understanding of patient and care partner practical, emotional, financial and policy needs.

 

 

Moderator: Libby Couchon, MS, LCGC

Genomic Science Liaison at Ambry Genetics

Libby Couchon, MS, LCGC, is a Genomic Science Liaison at Ambry Genetics. She is certified by the American Board of Genetic Counseling and is a licensed Genetic Counselor in the state of Massachusetts. She received her Master’s in Genetic Counseling from Virginia Commonwealth University in 2001. After training at VCU, she spent 2 years as a clinical counselor in the General Genetics clinic at Nationwide Children’s Hospital in Columbus, OH before transitioning to industry. Libby has over 20 years of experience as an industry counselor focusing on the development of clinically relevant diagnostic testing for rare diseases and leading clinical education initiatives for patients and providers.

 

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EducateNext is committed to providing independent, objective, and evidence-based educational content. None of the individuals in control of this content—including our planners, reviewers, and approval faculty—have any financial relationships with ineligible companies to disclose. For all educational sessions, speaker-specific disclosures regarding any potential conflicts of interest are required and will always be shared directly with learners at the beginning of their respective presentations.

Ambry Genetics is approved as a provider for continuing education program by NSGC and ASCLS P.A.C.E ® Programs.

Credit eligibility varies by activity; please see below for the specific credit types offered for this course.

Available Credit

  • 0.10 NSGC CEU

Price

Cost:
$0.00
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Please note: Attendees must track continuing education (CE) credits towards recertification. Credit cannot be claimed for both live and recorded versions of the same webinar; attendance is cross-checked annually. We apologize for the inconvenience and are working toward a single-platform solution to automatically manage dual registration and integrated transcript tracking.