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
Speakers:
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
