Despite scientific progress, millions of Europeans still experience avoidable diagnostic delays because early detection is not structurally embedded in national health planning and financing systems.
The Coalition drives evidence-based advocacy to make the case for early diagnosis as a structural priority at the national level. We exist to demonstrate both economically and politically that early diagnosis is not a cost, but a high-value investment for patients, healthcare systems, and society, and provide actionable recommendations to policymakers.
The Coalition brings together public affairs experts, economists, clinicians, policymakers, and the pharmaceutical industry to demonstrate the socio-economic value of early diagnosis and translate EU ambition into measurable national implementation. By building the investment case, supporting reimbursement pathways, and promoting public-private partnerships, the Coalition positions early diagnosis as a cornerstone of health equity, fiscal sustainability, and resilient healthcare systems.
The Coalition partners include:
Knowledge Partners:
Contribute to global policy discussions on universal health coverage by highlighting the importance of early diagnosis for people living with rare diseases. Share European experiences and good practices in international fora, supporting learning and collaboration across regions.
Support evidence-informed dialogue on improving earlier diagnosis of rare diseases across Europe. Engage with European institutions and stakeholders to ensure that initiatives and policies consider the role of early diagnosis. Facilitate exchange and cooperation to help translate European ambitions into concrete action at national level.
Support efforts to integrate early diagnosis of rare diseases into national health strategies and planning processes. Bring together policymakers, healthcare authorities, clinicians and patient advocacy groups to discuss solutions that improve access to diagnostics and screening. Encourage pilot initiatives that demonstrate practical approaches to implementing earlier diagnosis.
Understanding the economic case for early diagnosis is key for policy makers to initiate change. In partnership with Copenhagen Economics, we will develop economic evidence to inform National, European and Global policy discussions on the value of earlier diagnosis of rare diseases for patients, healthcare systems and society and to guide their decision on policies and decisions that will yield the highest return on investment.
