Skip to content
Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt
mayo 2024

The opinion of people living with a rare disease on newborn screening


Early diagnosis is key for people living with a rare disease as it allows families to plan for their child’s care and treatment, to prevent severe disabilities from developing, and even to save lives. Access to early diagnosis can be improved through newborn screening, which is the process of systematically testing newborns just after birth and making sure that they can receive appropriate care and follow-up. While there are still discrepancies in newborn screening programmes across Europe, the concept of newborn screening is widely accepted among the rare disease community: a previous Rare Barometer survey showed that 95% of people living with a rare disease were in favour of performing tests to diagnose rare diseases at birth.
The survey presented here, conducted by Rare Barometer with the Screen4Care project, goes further and explores the point of view of people living with a rare disease and their close family members on the possibility to screen their condition at birth, thus considering their direct experience. These insights valuably contribute to the development of newborn screening programmes across Europe.

Downloads

EnglishNEWBORN SCREENING SURVEY REPORT
DASHBOARD – EUROPEAN RESULTS
FACTSHEET LONG
FACTSHEET
BulgarianРЕЗУЛТАТИ, ПОЛУЧЕНИ В ЕВРОПА
CzechEVROPSKÉ VÝSLEDKY
Informační přehled s hlavními evropskými výsledky
GermanEUROPÄISCHE ERGEBNISSE
Informationsblatt mit den wichtigsten europäischen Ergebnissen
DanishEUROPÆISKE RESULTATER
Faktaark med de vigtigste europæiske resultater
DutchRESULTATEN IN EUROPA
Factsheet met de belangrijkste resultaten in Europa
SpanishRESULTADOS EUROPEOS
Hoja informativa con los principales resultados europeos
Finnish EUROOPAN TULOKSET
FrenchRÉSULTATS EUROPÉENS
Infographie avec les principaux résultats européens
GreekΕΥΡΩΠΑΪΚΑ ΑΠΟΤΕΛΕΣΜΑΤΑ
Ενημερωτικό δελτίο με τα βασικά ευρωπαϊκά αποτελέσματα
CroatianEUROPSKI REZULTATI
Pregled podataka s ključnim europskim rezultatima
HungarianEURÓPAI EREDMÉNYEK
ItalianRISULTATI EUROPEI
Scheda informativa con i principali risultati europei
LithuanianEUROPOS REZULTATAI
LatvianEIROPAS REZULTĀTI
Norwegian EUROPEISKE RESULTATER
PolishWYNIKI DLA EUROPY
Arkusz informacyjny z kluczowymi wynikami dla Europy
PortugueseRESULTADOS EUROPEUS
Infográfico com os principais resultados europeus
RomanianREZULTATELE EUROPENE
Fișa cu principalele rezultate europene
RussianЕВРОПЕЙСКИЕ РЕЗУЛЬТАТЫ
SwedishEUROPEISKA RESULTAT
Informationsgrafik med viktiga europeiska resultat
SlovakianVÝSLEDKY V EURÓPE
SlovenianEVROPSKI REZULTATI
UkrainianЄВРОПЕЙСЬКІ РЕЗУЛЬТАТИ