@Screen4Care

Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening and Artificial Intelligence

screen4care.eu/
Joined October 2021
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  • Following115
  • Followers329
88Media
📢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/screen4… #RareDisease #NewbornScreening
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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
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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
Meeting participants stand on the steps of the venue.

ALT Meeting participants stand on the steps of the venue.

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

Screening rare diseases at birth! - EURORDIS-Rare Diseases Europe

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...

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

Screening rare diseases at birth! - EURORDIS-Rare Diseases Europe

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...

eurordis.org
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🩺 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/6436… Thank you for participating and sharing—your support matters! 🙏 #Screen4Care
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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
"Children with rare diseases should not be discriminated, as they too have the right to quality treatment, care and support." Dainius Puras, Special Rapporteur on the Right to Health (OHCHR)

ALT "Children with rare diseases should not be discriminated, as they too have the right to quality treatment, care and support." Dainius Puras, Special Rapporteur on the Right to Health (OHCHR)

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🧬 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
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🧬 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
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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/Sc… #Screen4Care #RareDisease #NBS #NewbornScreening #EUResearch
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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
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