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Screen4Rare Profile
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
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@Screen4Rare
Screen4Rare
1 year
#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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@Screen4Rare
Screen4Rare
13 days
🌟 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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@Screen4Rare
Screen4Rare
2 months
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
Screen4Rare
2 months
📢 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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@Screen4Rare
Screen4Rare
3 months
⏰ 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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@Screen4Rare
Screen4Rare
4 months
🌐 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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@ipopi_info
IPOPI
3 months
🌍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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@Screen4Rare
Screen4Rare
5 months
🗣️“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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@Screen4Rare
Screen4Rare
4 months
🌐 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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@Screen4Rare
Screen4Rare
6 months
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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@Screen4Rare
Screen4Rare
5 months
🎥 “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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@Screen4Rare
Screen4Rare
5 months
🗨️ 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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@Screen4Rare
Screen4Rare
5 months
📢 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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@Screen4Rare
Screen4Rare
5 months
🗣️“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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@ipopi_info
IPOPI
5 months
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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@Screen4Rare
Screen4Rare
5 months
⏳ Just 1 day to go until #InternationalNeonatalScreeningDay! 👉 Learn more: https://t.co/W0DCPYkhQQ #INSD2025
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@LeireSolis
Leire Solis
5 months
@FEDER_ONG
FEDER | Enfermedades Raras
5 months
👶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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