Screen4Rare
@Screen4Rare
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A multi-stakeholder platform launched by IPOPI, ISNS and ESID aiming to exchange knowledge and best practices on newborn screening for rare diseases.
Joined February 2022
#DidYouKnow that 140 million babies are born each year, but only one in three receive screening of any type? On #INSD, we call on policymakers across the world to support equal access to #neonatalscreening Check out our new factsheet for more information 👇
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🌟 Early detection saves lives! 🌟 At @Screen4Rare, we work every day to ensure treatable rare diseases are identified as early as possible, giving every child the chance for a healthier future. Help us spread the word: follow us and share so more people understand the
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A big thank you to everyone who joined today’s discussion at the European Parliament on “Newborn Screening for Rare Diseases: How can the EU lead on the global stage?", and to our hosts, speakers, and partners! 🙏 Together, we are driving Newborn Screening for Rare Diseases to
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📢 Screen4Rare is hosting a meeting at the European Parliament on “Newborn Screening for Rare Diseases: How can the EU lead on the global stage?” The event is hosted by MEPs @TomislavSokol, Sirpa Pietikäinen, and @BillyKelleherEU, with the support of the MEP Alliance for Rare
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⏰ Don’t forget! The next #Screen4Rare event takes place at the European Parliament. Hosted by MEP @TomislavSokol and supported by the MEP Alliance for Rare Disease Newborn Screening, this high-level discussion will focus on how Europe can lead on early diagnosis, equity and
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🌐 We’re happy to announce the next @Screen4Rare event in the European Parliament: As the EU advances its Life Science Strategy, prepares the new Biotech Act, and reviews the legislation on Orphan Medicinal Products, Newborn Screening for Rare Diseases (NBS) must be part of the
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🌍Today we join the global community in marking World Patient Safety Day – a key moment to remind everyone that patient safety must be at the heart of healthcare, especially for people living with primary immunodeficiencies (PID). At @ipopi_info, we work every day to promote
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🗣️“Every year, 45M babies are screened. 30,000 lives changed." Patricia Guthrie honors her father Dr. Robert Guthrie’s legacy and celebrates the global impact of newborn screening at the Intl Neonatal Screening Conference. #NewbornScreening #PublicHealth
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🌐 We’re happy to announce the next @Screen4Rare event in the European Parliament: As the EU advances its Life Science Strategy, prepares the new Biotech Act, and reviews the legislation on Orphan Medicinal Products, Newborn Screening for Rare Diseases (NBS) must be part of the
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In 2021, only 27% of babies born around the world were screened at birth Despite its potential to diagnose many treatable diseases, there are still many inequities when it comes to access to neonatal screening 👉 That's why we celebrate International Neonatal Screening Day
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🎥 “Newborn screening is a critical gateway to early diagnosis and timely treatment, offering every child the best possible start in life.” — Dr @ABanerjeeWHO, WHO Watch Dr Banerjee’s message for International Neonatal Screening Day and learn how WHO is working to improve access
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🗨️ On International Neonatal Screening Day, MEP @TomislavSokol (EPP, Croatia) voices his support for expanding newborn screening across Europe. #INSD2025 #NewbornScreening #RareDiseases #EUHealth #PatientAdvocacy
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📢 Press Release – International Neonatal Screening Day (INSD) Today, on June 28, we mark International Neonatal Screening Day, a global reminder of the vital role early detection plays in saving newborn lives and ensuring healthier futures. 📄 Read our full press release:
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🗣️“Every year, 45M babies are screened. 30,000 lives changed." Patricia Guthrie honors her father Dr. Robert Guthrie’s legacy and celebrates the global impact of newborn screening at the Intl Neonatal Screening Conference. #NewbornScreening #PublicHealth
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INSD Celebrations at CHU Liège – 26 June 2025 🎉 IPOPI's Executive Director, @JohanPrevot, visited CHU Liège ahead of International Neonatal Screening Day (INSD) celebrations. Johan wishes to congratulate the team at CHU Liège for their commitment to raising awareness about
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⏳ Just 1 day to go until #InternationalNeonatalScreeningDay! 👉 Learn more: https://t.co/W0DCPYkhQQ
#INSD2025
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👶Si volvieras a nacer… ¿qué lugar elegirías? En el marco del, #DíaMundialDelCribadoNeonatal, pedimos una Ley de Cribado Neonatal Universal que garantice el diagnóstico precoz en igualdad para todos los bebés, nazcan donde nazcan. https://t.co/ZRYtaSnlLU
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