Rare & Neglected Conditions
Working with communities facing chronic neglect to rethink access, research priorities, and care pathways.
Systemic Problem
Conditions are not only biologically rare or common; they are socially prioritized or neglected. Many diseases remain under-researched, underfunded, and poorly integrated into health systems, despite their heavy individual and collective burden. Neglect is produced by a combination of weak data infrastructures, low political visibility, fragmented care pathways, and limited patient representation.
Our Approach
We work with affected communities to redesign research priorities, data infrastructures, and care pathways. We treat neglect as a systemic phenomenon, not as an accident.
What We Build
Participatory disease observatories, equity-aware research infrastructures, patient-led registries, and evidence-generation tools.
Related Initiatives
BeeMyBlood
Access to safe, compatible blood products is not only a clinical issue; it is an infrastructural and governance problem.
EDITSCD
Gene therapy and genome editing approaches for sickle cell disease require rigorous evaluation frameworks that go beyond clinical efficacy to assess equity, access, and long-term governance.
ASCertain
Many populations remain statistically invisible.
ESCF Collaborations
Patient organizations are often structurally under-resourced and weakly integrated into research and policy infrastructures.
Lancet Haematology Commission on SCD
Global policy on sickle cell disease suffers from fragmented evidence and weak patient inclusion in priority-setting.
HELIOS Network
Hemoglobinopathies research remains fragmented across disciplines, countries, and data systems.
Stakeholders
Patient organizations, clinical centers, public health authorities, researchers.
How We Evaluate
We assess not only clinical outcomes, but also visibility, inclusion, governance quality, and policy traction.
Collaboration
We collaborate with actors willing to rethink what counts as legitimate evidence and who gets to define research priorities.