CRA’s Life Sciences Practice provided pro bono support to the European Coalition for Newborn Screening (ECNS) to address profound inequalities in access to rare disease screening.
Despite newborn screening (NBS) being one of the most successful public health interventions of the past century, profound inequalities in access persist across Europe. The number and type of disorders screened vary significantly from one country to another, from less than five in some countries, to over 50 in others, leaving many infants without timely access to diagnosis for rare yet treatable conditions.
The ECNS assembles relevant European stakeholders to build towards a greater awareness of the issue of NBS inequality, and calls for policymaker action to implement necessary changes.
CRA developed a policy-driven positioning paper for ECNS, aimed at European and national institutions, to define the Coalition’s purpose, unique value, and call to action.
Key components of this pro bono support included:
- Landscape assessment: Conducting a deep-dive analysis of the current NBS landscape through secondary research and interviews with leading NBS experts to identify structural barriers and best practices across Europe
- Policy formulation: Prioritizing and refining high-impact policy recommendations through engagement with the ECNS and key European experts in the field
- Strategic synthesis: Developing a compelling positioning paper to serve as the Coalition’s primary advocacy tool for engaging with influential European stakeholders
