Screen4Rare

#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 👇

Keeping #INSD in the spotlight reminds us that newborn screening is essential for protecting infant health. It highlights the importance of early diagnosis, promotes scientific progress, and supports the global exchange of knowledge to improve outcomes for every newborn. 💛 Learn more: 🔗 lnkd.in/gZzUn9JP #INSD #NewbornScreening #GlobalHealth #EarlyDiagnosis

👏 Screen4Rare’s work was highlighted at the ERN RITA General Assembly.

A strong start in life begins with early care. As Rare Disease Day approaches, we highlight how #NewbornScreening plays a vital role in early diagnosis and timely treatment for rare conditions. Learn more 🔗lnkd.in/gZzUn9JP #INSD #NewbornScreening #EarlyDiagnosis #RareDiseaseDay

New year, new beginnings, and a peaceful sleep for your newborn. Together, we can ensure every child has a healthy start, share the importance of newborn screening 💛 👉 screen4rare.org #INSD #NewbornScreening

🌟 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. As we step into the New Year, let’s aim higher and go further. Let’s build something bigger, bolder, and new in the field of early diagnosis, so no child is left behind because of a late diagnosis. Help us spread the word: follow us and share so more people understand the importance of early detection. Together, we can turn awareness into action 💛 🔗 screen4rare.org #Screen4Rare #RareDiseases #EarlyDiagnosis #NewYearGoals #Health #EarlyDetection

🌟 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 importance of early diagnosis. Together, we can make a difference! 💛 Together, we can make a difference! 💛 🔗 screen4rare.org #Screen4Rare #RareDiseases #EarlyDiagnosis #Health

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 become a cornerstone of public health in Europe—and a model for global leadership. The event was hosted by MEPs @TomislavSokol, Sirpa Pietikäinen, and @BillyKelleherEU, with the support of the MEP Alliance for Rare Disease Newborn Screening. #EUHealth #RareDiseases #NewbornScreening

📢 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 Disease Newborn Screening. This meeting will bring together @Screen4Rare, @ERNs, and international experts for an insightful exchange on how the EU can strengthen its role as a global leader in newborn screening for rare diseases.

⏰ 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 innovation in Rare Disease care. 📌 Places are limited – secure your spot today! 🔗 Register here: docs.google.com/forms/d/e/1FAI… #RareDiseases #NewbornScreening #EU4Health #HealthInnovation

🌐 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 conversation. Against the backdrop of the genomics revolution and following the disbanding of the US NBS advisory committee, Europe is uniquely positioned to take the lead on early diagnosis, equity, and innovation in Rare Disease care. Hosted by MEP @TomislavSokol (EPP, Croatia), supported by the MEP Alliance for Rare Disease Newborn Screening, and organised by #Screen4Rare (@ipopi_info, @ISNSNeonatal and @ESIDsociety), this high-level discussion will bring together policy makers, patient advocates, clinicians and global experts to explore how we can advance early diagnosis, equity and innovation in Rare Disease care in the #EU and beyond. This discussion comes at a crucial moment, following the adoption of the WHA Resolution on Rare Diseases, which calls for equitable and timely access to NBS programmes worldwide – a global signal that reinforces the EU’s responsibility to act. 📌 Places are limited – don’t miss out! 🔗Register now: lnkd.in/dSCQCcGq For more information, please contact: samuele@bridges.be #RareDiseases #NewbornScreening #Genomics #LifeScienceStrategy #BiotechAct #OrphanDrugs #PublicHealth #Screen4Rare #EU4Health #healthinnovation

🌍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 safer practices: we raise awareness among patients and caregivers, collaborate with healthcare professionals and policymakers, and support national PID patient organisations to ensure that care is delivered in a safe, effective and dignified way. 🔶 This year, we are proud to share a special message from @martinepergent, IPOPI President, highlighting the importance of putting patient safety at the top of health priorities – ensuring timely diagnosis, safe access to treatments, and truly listening to patients’ needs. Patient safety is everyone’s responsibility. 💜 Together, we can make a difference. #WorldPatientSafetyDay #PatientSafety #IPOPI #PrimaryImmunodeficiencies

🗣️“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