ESCF Collaborations
Systemic Problem
Patient organizations are often structurally under-resourced and weakly integrated into research and policy infrastructures.
Existing Landscape
Patient federations often lack the technical capacity, data infrastructure, and governance frameworks to participate as equal partners in research and policy.
What We Build
We support the European Sickle Cell Federation through shared digital infrastructures, knowledge commons, and participatory governance models.
Our Role
We provide methodological, infrastructural, and strategic support to ESCF.
Evaluation Strategy
We assess coordination capacity, representation, and policy traction.
Partners
European Sickle Cell Federation
ESCF is a key partner for our work on sickle cell disease, including EDITSCD and participatory research initiatives
Opportunities
We welcome collaborations with patient federations and networks seeking to strengthen their infrastructural capacity.