Neonatal / Photo Screening: The Romanian Association of Patients with Primary Immunodeficiers
On the occasion of the International Day of Neonatal Screening (IND), the Romanian Association of Patients with Primary Immunodeficiencies (ARPID) joins the global call launched by the screen4rare platform, requesting the emergency implementation of a universal neonatal screening program in Romania, in acc Global public health priority for equity and inclusion.
This historical resolution requires concrete actions from the states and extended access to interventions that can significantly reduce the burden of rare treatable diseases – including by introducing neonatal screening.
“Neonatal screening is not a luxury, but a public health obligation. Romania is no longer allowed to delay the implementation of testing for diseases such as SCID – severe immunodeficiencies that, untreated in time, lead to almost safe death in the first months of life. There is a need for political will, empathy and responsibility.”
– Otilia Stanga, president of ARPID
Although this test is already standard in many countries, only 33% of newborns in the world currently benefit from screening for conditions that can be treated if detected in time.
“A simple test-a drop of blood from the heels-can detect serious, but treatable diseases, giving children a real chance at a normal life. It is a huge intervention on the development, health and future of over 100,000 newborns annually,” says international experts within Screen4.
Babies in Romania are currently tested in the neonatal screening program, only for 3 conditions, while in other European countries, babies are tested for dozens of diseases. The early diagnosis of these conditions would allow the rapid establishment of effective treatments, preventing severe disabilities and any fatal complications caused by the disease.
Romania – left behind
While Portugal has introduced screening for severe combined immunodeficiency (SCID) in the national program in April 2025, and France is about to do it starting September 1, Romania does not yet have a functional program to detect this condition.
Moreover, until before 2025, severe immunodeficiency screening is part of national neonatal screening programs, including the United States (all 50 states plus territories, since 2018), Canada, Norway, Germany, Switzer Israel, Qatar, New Zealand, Hong Kong, Taiwan and Singapore, as well as Brazil, Australia, among others.
WHO Resolution: Universal access to diagnosis is needed
The resolution recently adopted by the WHO emphasizes the need for universal access to early diagnosis, including neonatal screening, offering a clear work for governments and public health organizations.
The Romanian Association of Patients with Primary Immunodeficiers asks the Ministry of Health to treat this historical opportunity with maximum seriousness and to take the necessary steps to include SCID in the Panel of Tested Diseases in the first days of life.
Arpid is a non-governmental national organization that supports people living with primary immunodeficiencies and advocates for access to early diagnosis, adequate treatment and a dignified life for affected patients.
Screen4rare is an international platform launched by IPOPI, ISNS and ESID, dedicated to promoting neonatal screening for rare diseases. Its goal is equitable access to this saving intervention for each child, no matter where it is born.
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