Partner Organisations

Screen4Rare is committed to collaborating with all stakeholders, including relevant industrial partners, with an interest in newborn screening for rare diseases and welcomes requests by patient organisations, professional groups, screening experts, physician societies, and other relevant stakeholder organisations, to join the initiative as partner organisations.

SMA Europe

SMA Europe is a non-profit umbrella organisation of spinal muscular atrophy (SMA) patient organisations from across Europe. SMA Europe works to bring effective treatments and optimal care to everyone living with SMA.

The SMA NBS Alliance was founded by SMA Europe in 2020 to reduce the time it takes for newborns in Europe to be diagnosed with SMA. The Alliance seeks to ensure that newborn screening programmes in all European countries diagnose all newborn children with SMA.


ERN-RITA seeks to improve the care of patients with rare immunological disorders, and to stimulate equal access to such care for all the European Union member states.

ERN-RITA’s extensive network of expertise centers from all the EU member states contributes towards efforts to analyse and harmonise newborn screening for rare primary immunodeficiencies as well as other genetic (metabolic) disorders .


MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients and their families affected by inherited metabolic rare diseases. MetabERN is driven by the principle of patient-centred care to provide its services, aiming to improve patients’ and families’ quality of life.

MetabERN is entirely led by patients and experts.