Public Webinar: Is Traditional Health Financing Leaving Rare Diseases Behind

How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases?

Join us for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative financing mechanisms, discuss enabling conditions for implementation, and inform policy and advocacy actions.

In this first session, we will focus on the structural challenges in current health financing systems — including small patient populations, high treatment costs, HTA limitations, fragmented risk pools, and budget impact concerns — that leave 95% of rare diseases without treatment and millions without access to care. The discussion will explore how these systemic weaknesses contribute to inequities in access to diagnosis, treatment, and care. This session will ground the series in global evidence and set the stage for exploring innovative solutions in the following webinars.

🗓️ Thursday 23rd April, 2pm – 3pm CEST

📲 Registration link

Stay tuned for more details on speakers soon!

This project is being carried out with the support of Fondation Ipsen, under the aegis of Fondation de France.