Screen4Care

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

[Screen4Care @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! 🙏✨

🔗https://t.co/SAIfnz10aG

#RareDisease #NewbornScreening

[Screen4Care @Screen4Care]

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

[EURORDIS-Rare Diseases Europe @eurordis]

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.⏬
https://t.co/VH5gJie59q

[Screen4Care @Screen4Care]

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! 🙏

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[Screen4Care @Screen4Care]

✨ 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

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[Screen4Care @Screen4Care]

✨ 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! 🙏

[Screen4Care @Screen4Care]

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!

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[Screen4Care @Screen4Care]

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. 🔍

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#Screen4Facts #2024NBS #NBS

[Screen4Care @Screen4Care]

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.

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[Screen4Care @Screen4Care]

For the sake of children and parents, let’s embrace NBS. 🙏 #NBS #RareDisease #Screen4Facts

Discover all the #RareBarometer survey findings here:
https://t.co/9bdA5Nq4dn

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[Screen4Care @Screen4Care]

🧬 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?

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#2024NBS #Screen4Care

[Screen4Care @Screen4Care]

👶 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.

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[Screen4Care @Screen4Care]

Discover all the #RareBarometer survey findings here:
https://t.co/9bdA5Nq4dn

[Screen4Care @Screen4Care]

🧩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

[Screen4Care @Screen4Care]

🩺 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.

👉 https://t.co/u81wS3xxyu

Thank you for participating and sharing—your support matters! 🙏

#Screen4Care

[EURORDIS-Rare Diseases Europe @eurordis]

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: https://t.co/b7re3nERPN

#NewbornScreening #RareDiseases #EqualCare

[Screen4Care @Screen4Care]

🧬 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

[Screen4Care @Screen4Care]

🧬 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

[Screen4Care @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! 📬✨

🔗 https://t.co/v2Gi6GroyR

#Screen4Care #RareDisease #NBS #NewbornScreening #EUResearch

[EU Science & Innovation 🇪🇺 @EUScienceInnov]

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 ➡️ https://t.co/0D7bEgSFYO

#ResearchImpactEU #HorizonMagazine