Speaking Engagement

ISPOR The Global Socioeconomic Impact of Rare Diseases: A Call for Action Webinar

May 22, 2024
Scientist with petri dish

CRA’s Clara Zacharko will be presenting a CRA study on an ISPOR webinar titled “The Global Socioeconomic Impact of Rare Diseases: A Call for Action” on May 22nd from 10:00am-11:00am EDT.

Studies that estimate the socioeconomic impact of rare diseases can guide policy action. This study aims to better understand the socioeconomic impact of rare disease in middle-income countries, which few studies have considered previously. These countries are likely to face a different set of challenges due to differences in prevalence, less developed healthcare systems and more stringent resource constraints.

In this study, the six rare diseases were selected to represent different categories of disease and 11 countries with different income-levels were selected across global regions (Latin America, Africa, Eastern Mediterranean Region, Asia, and Oceania).

Join us for a presentation that discusses the study’s objectives, methodology, and findings. During this educational webinar, a multi-stakeholder panel will reflect on the findings and implications from the perspectives of a health economist, the patient community, and the pharmaceutical industry.

Speakers on the panel will explore topics including:

  • The comparison of studies conducted in High-Income Countries (HICs), and the impact of data scarcity in LMICs on the socio-economic estimates;
  • The consequences of low investment in rare diseases on the overall burden;
  • The value of investing in diagnosis and early interventions;
  • The ‘best-buys’ to increase investment in rare diseases.

Expert panelists:

  • Carina Righetti, MSc, Director, Global Market Access & Policy, J&J, Princeton, NJ, USA
  • Ann-Lise Mikolajczak, PharmD, Manager, Global Health and Access, IFPMA, Geneva, Switzerland
  • Durhane Wong-Rieger, PhD, Chair, Rare Diseases International (RDI), Toronto, ON, Canada
  • Clara Zacharko, Senior Associate, Charles Rives Associates (CRA), London, England, UK
  • Steven Simoens, PhD, Professor of Health Economics, KU Leuven, Leuven, Belgium

For more information on this event, click here.

Meet the presenters