Screen4Care

📢Important Announcement Our time on X with the #Screen4Care account is coming to an end, but the conversation continues on LinkedIn. Join us there—we’d love to stay connected! 🙏✨ 🔗linkedin.com/company/screen… #RareDisease #NewbornScreening

Have a minute? ⏰Watch "60 Seconds with Alessandra Ferlini" to learn how our Scientific Coordinator is playing a key role in exploring the potential of next-generation sequencing and digital tools to improve outcomes for people living with rare diseases.👇 #Screen4Care @Roche

Today we hosted @Screen4Care’s Newborn Screening (NBS) Forum, brining together experts to explore the implications of genetic NBS. As a core partner in #Screen4Care, we are ensuring that the patient voice is at the forefront of these vital discussions.⏬ go.eurordis.org/4qpRco

We are grateful to be part of a growing global community of researchers actively exploring the potential of newborn screening and digital tools to improve outcomes for children living with a rare disease . All signs suggest that our community is on the right track! 🙏 2/2

✨ Thanks to @ICoNSeqOrg for hosting a fantastic conference in New York last week and inviting Alessandra Ferlini, Scientific Coordinator at #Screen4Care, to share a poster presentation with important updates on our consortium. #ICoNS24 1/2

✨ What a great time we had at #AOMCJMS2024 in Nara, Japan! 🔬 Our Sci Coordinator Alessandra Ferlini was honoured to speak on genetic diagnosis of neuromuscular diseases, exploring #Screen4Care’s mission to advance #GenomicMedicine. 🧬 Thanks to @one333 for the opportunity! 🙏

We are committed to contributing to #NBS programme expansions that bring benefits while addressing challenges, such as impacts on treatment access, psychological well-being, and family dynamics. See you next year for more awareness on #NewbornScreening! 3/3

Thanks to recent and ongoing scientific and technological advancements, discussions are underway to expand #NBS programmes globally. At #Screen4Care, we believe in the importance of advancing research in newborn screening. 2/3

And that's a wrap for #NewbornScreeningAwarenessMonth 2024! 🌍 Did you know that newborn screening varies from country to country? National programmes currently screen for different numbers of rare conditions, as shown in the picture below. 🔍 1/3 #Screen4Facts #2024NBS #NBS

For the sake of children and parents, let’s embrace NBS. 🙏 #NBS #RareDisease #Screen4Facts Discover all the #RareBarometer survey findings here: eurordis.org/publications/r… 3/3

👶 NBS can offer more than a faster diagnosis. 🩺 It can provide timely info for family planning, helping parents make informed decisions. It can connect families to economic & psych support, special ed, and physical therapy, all essential for effective childcare. 2/3

🧬 Did you know that 84% of #RareBarometer survey respondents support newborn screening for rare diseases to help parents make informed decisions and prepare for the future, even when treatments are not yet available? 1/3 #2024NBS #Screen4Care

Discover all the #RareBarometer survey findings here: eurordis.org/publications/r…

🧩Did you know 6% of parents of children w/ rare diseases would have preferred not to receive a diagnosis at birth? Anxiety, stigma and fear drive this choice. ❤️We understand these fears but we believe knowledge empowers & #NBS can help families from the start💪 #Screen4Facts

🩺 Calling all clinicians! Contribute to developing a clinical decision-support model for rare diseases by taking our #survey, in collaboration with @bapemed, by Sept 30. 👉 screen4c.limesurvey.net/643664?lang=en Thank you for participating and sharing—your support matters! 🙏 #Screen4Care

No child should be deprived of early diagnosis and care that can improve or save lives. Support a harmonised European approach to newborn screening. Read the 11 Key Principles, available in 13 languages: go.eurordis.org/Jakheu #NewbornScreening #RareDiseases #EqualCare

🧬 82% of parents of children with rare diseases wish for a birth diagnosis, according to the latest #RareBarometer survey. Early diagnosis can improve treatment and help children prepare for adulthood. 🌱 Let’s support #NBS for better futures. 🙏 #Screen4Care #Screen4Facts

🧬 September is Newborn Screening Awareness Month and we’re all in! This year we’re focusing on providing soon-to-be parents with key insights on #RareDisease screening. Stay tuned!🌟 #Screen4Facts #Screen4Care

Have you checked out the second issue of our #newsletter yet? 📰 If not, feel free to dive in using the link below. And don't forget to subscribe so you don't miss future issues! 📬✨ 🔗 screen4care.eu/newsletter/Scr… #Screen4Care #RareDisease #NBS #NewbornScreening #EUResearch

Early genetic checks being developed by researchers with EU and industry funding will accelerate treatments for illnesses that affect millions of people in Europe. Read more ➡️ europa.eu/!wRCmQ8 #ResearchImpactEU #HorizonMagazine