LAL-D Patient Organization joins the European call to strengthen newborn screening and reduce inequalities across Europe
LAL-D Patient Organization is proud to have contributed to the new European position statement on newborn screening published by EURORDIS as a member of the Newborn Screening Working Group (NBS). The statement brings together representatives from across the rare disease community to call on the European Union to establish a multi-stakeholder European Newborn Screening Group that can support Member States in strengthening and harmonising newborn screening programmes.
The document highlights the significant inequalities that currently exist across Europe, where newborns have access to very different screening programmes depending on the country in which they are born. These disparities can directly affect access to timely diagnosis, treatment and improved health outcomes for children living with rare diseases.
The statement emphasises that newborn screening is a proven public health measure that enables early detection and intervention before symptoms appear, preventing irreversible disability and improving quality of life for patients and families. It also underlines the urgent need for a coordinated European strategy that ensures equal opportunities for all newborns across the European Union.
As an organisation committed to improving early diagnosis and comprehensive care for people living with Lysosomal Acid Lipase Deficiency (LAL-D), we are honoured to have contributed to this collective effort alongside patients, families, healthcare professionals and experts from across Europe. EURORDIS specifically acknowledges the contribution of the members of the Newborn Screening Working Group in developing this position statement.
Call for endorsements
LAL-D Patient Organization encourages patient organisations, umbrella groups, healthcare professionals, scientific societies and all stakeholders involved in rare diseases to endorse this important initiative.
EURORDIS is welcoming endorsements until 30 September 2026, providing an opportunity for the rare disease community to speak with one voice and support stronger European cooperation on newborn screening. Organisations can endorse the statement through the official EURORDIS form.
Read the full position statement:
EURORDIS Position Statement on Newborn Screening
Endorse the statement:
Endorsement form
