On the occasion of International Rare Diseases Day 2024, the Plateforme Maladies Rares held a press conference. The event highlighted the challenges and hopes of the millions of people affected by these often unrecognized conditions.
With nearly 3 million French people affected, the 4th National Plan for Rare Diseases represents a decisive opportunity to transform the reality of these patients and their families. We are calling for ambitious measures and adequate funding to :
> Develop treatments for all diseases, including the rarest ones that have no commercial interest.
>Faster diagnostics.
>Detect from birth a greater number of diseases with treatments. 👉🏻 Improve the life course of patients and their carers.
>Increase funding for research.
The conference highlighted alarming findings and clearly expressed our expectations for concrete, financially-supported measures. We are launching a call for action to set up an interministerial steering committee for this 4th plan.