From science in development to science in practice. Here, the Chain of Care goes beyond
the organization into a broader ecosystem that includes patient associations, scientific
societies, and advocacy groups working to improve awareness, diagnosis, and patient care.
In rare and complex conditions, awareness is essential. Across regions, many patients
are still undiagnosed or without access to appropriate care.
Patient associations play a key role, working to close these gaps. Through advocacy, education,
and data collection, they help improve recognition of diseases and support better care pathways.
In Immunodeficiencies, progress is visible, but challenges remain. Secondary Immunodeficiencies
are often under-recognized, and diagnosis depends on closer coordination between medical specialties.
In this context, collaboration across the community is essential. It helps turn shared experience
into better, more consistent care.
Watch perspectives from patient association leaders and experts
to see how collaboration supports care in practice.
