Effectively articulating burden for future health technology assessments

Written on Wednesday 16th March 2022

As the uptake of personalized medicine and advanced therapies has increased, so has the pressure on healthcare budgets. To enable informed decisions on the long-term value that new therapies may provide to people living with rare disease, it is critical to convey a comprehensive picture of burden and do so in a way that resonates with decision makers.

In this webinar, we will look at:

  • Why burden is so important in value assessment
  • How to address all facets of burden
  • How to recognize and overcome the disability paradox
  • How to collect data on burden and articulate it effectively
  • Why collaboration between patient communities and Pharma is so  important
  • How patient representatives should prepare to contribute to HTAs for patient access and reimbursement


Roanna Maharaj - Patient advocate and thalassemia community representative

Sheela Upadhyaya - Rare disease expert

Ella Balasa - Patient advocate, speaker, published writer, and health engagement consultant

Josie Godfrey - Director, JG Zebra Consulting, and Co-Founder, Realise Advocacy

Rosemary Jose - Senior Director, Strategic Market Access, OPEN Health Evidence and Access

Karen Bailey - Associate Director, Patient-Centered Outcomes, OPEN Health Evidence and Access

Gavin Jones - Global Advisor, Rare Disease, OPEN Health