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“La Vida en Una Gota”: A Journey of Hope and Advocacy for Newborn Screening

January 2025
The below Member Comment article was shared with EURORDIS-Rare Diseases Europe by our member organisation, MasVisibles.

The documentary La Vida en Una Gota follows the inspiring journey of Judit, a young woman living with Glutaric Aciduria Type I (GA-I), as she travels across Spain to uncover the history of newborn screening programmes and seek answers to the pressing issue of inequity in access to these vital tests.

Judit’s journey begins with a question that echoes throughout the film: Why is access to early diagnosis and life-saving treatment determined by the region in which a baby is born? As she explores this disparity, Judit meets two pioneers of newborn screening in Spain, Dr. Carmen Ugarte and Dr. Federico Mayor Zaragoza, whose tireless efforts laid the foundation for these critical programmes. Their insights provide a historical perspective on how far these initiatives have come and the challenges that remain in ensuring equitable access for all.

The documentary also captures Judit’s poignant encounters with two other patients living with GA-I. These meetings highlight the stark contrast in their experiences and outcomes, differentiated by the timing of their diagnosis. One patient, diagnosed early through newborn screening, enjoys a significantly improved quality of life, while the other faces greater challenges due to a delayed diagnosis.

Through Judit’s journey, “La Vida en Una Gota” delivers a powerful message: newborn screening and public health programmes are essential for early diagnosis and better outcomes for patients. This heartfelt documentary advocates for an expanded and equitable newborn screening programme, not only in Spain but as a universal standard of care.

The film serves as a call to action, emphasising that investing in public health initiatives like newborn screening is not just a medical imperative – it is a matter of justice and equality for all children.