Kacper Rucinski | Project Lead
European Alliance of Neuromuscular Disorders Associations
Kacper is a founder and long-time president of Poland-based Fundacja SMA since 2013. Kacper is currently an Executive Committee Member European Alliance of Neuromuscular Disorders Association (EAMDA) and a founding member of the European Coalition for Newborn Screening (ECNS). He helps to steer an international advocacy initiative focused on improving newborn screening programmes in Europe. Focusing on public policies, working mainly with Brussels-based stakeholders (mainly, European institutions). Kacper’s earlier professional history includes humanitarian and human-rights work, including evaluating prison healthcare systems in South Asia as well as setting up and managing a parallel system of primary and secondary healthcare for refugees in the South Caucasus on behalf of a UN agency.
Appearances:
Day 1 - Tuesday 28 October @ 11:30
Working Group 2: Every Newborn Counts: The Quest for Equitable Newborn Screening in Europe
Over the past decade, newborn screening programs throughout Europe have seen significant advancements, both in the number of countries adopting them and the variety of disorders they screen for. Despite this progress, considerable disparities remain between countries, with the number of screened conditions varying widely. This session will explore the reasons behind these inequalities and discuss the advantages of achieving more equitable access to newborn screening across Europe for both patients and society.
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