Screen4Rare

A multi-stakeholder platform launched by IPOPI, ISNS and ESID aiming to exchange knowledge and best practices on newborn screening for rare diseases.

[Screen4Rare @Screen4Rare]

🌍 As we prepare for International Neonatal Screening Day, we invite you to share your upcoming activities, campaigns, and initiatives 🚀

📩 Submit your plans here: https://t.co/cnkCtQqjJK

#INSD2026

[Screen4Rare @Screen4Rare]

One more month to go until International Neonatal Screening Day 💙👶

Together, let’s raise awareness of the importance of #NeonatalScreening for every newborn ✨

#INSD #NeonatalScreeningMatters

[Screen4Rare @Screen4Rare]

“Our son’s disorder was identified thanks to newborn screening.” 💙👶

Behind every early diagnosis is a family whose life changed forever — not by fear, but by the chance to act early, access treatment, and move forward with hope.

As International Neonatal Screening Day 2026 approaches, we join the global community in highlighting the importance of newborn screening and advocating for equitable access for every child 🌍🩺

#INSD2026 #NewbornScreening #RareDiseaseAwareness

[Screen4Rare @Screen4Rare]

🩺 Every 15 minutes, a baby is diagnosed with a rare disease through newborn screening. Yet in many places, newborns are only screened for a small number of conditions, if at all.

🔬 Newborn screening is a simple but powerful public health program that can detect rare conditions before symptoms appear — giving families the chance for earlier diagnosis, faster treatment, and better outcomes.

🌍 Expanding access to comprehensive newborn screening can change — and save — lives. Early detection matters.

👉 https://t.co/irgplXQtPo

#NeonatalScreeningMatters

[Screen4Rare @Screen4Rare]

🧠 Quiz time!

“A silent condition…” 👶 Newborn diagnosed with Phenylketonuria — no symptoms. What prevents complications?

[Screen4Rare @Screen4Rare]

✅ Answer: Screening isn’t a diagnosis; it flags babies who need further testing.

[Screen4Rare @Screen4Rare]

🧠 Quiz time!

“An abnormal result… what does it mean?” 👶 Newborn screening comes back abnormal. Parents worry: “Is our baby sick?”

What’s true?

[Screen4Rare @Screen4Rare]

Early detection means early action ✨ Through #NeonatalScreening, newborns with treatable rare disorders can access life-saving care before symptoms develop 💙

More on #INSD 👉 https://t.co/0QXfNLwtwM

#NeonatalScreeningMatters #NewbornScreening #RareDiseases

[Screen4Rare @Screen4Rare]

Let’s turn awareness into action 🚀

International Neonatal Screening Day (#INSD) is an opportunity to highlight the importance of screening from day one.

Tell us how you are taking action: https://t.co/cnkCtQqjJK

#INSD2026

[Screen4Rare @Screen4Rare]

👶 Many babies are only screened for one or two conditions. Despite this, one baby with a rare disease is diagnosed by newborn screening every 15 minutes.

🧬 Neonatal screening is part of a life-changing public health initiative that has the power to speed up diagnosis and treatment of rare diseases in their earliest stages.

🔗 https://t.co/irgplXR1EW

#INSD #NewbornScreening

[Screen4Rare @Screen4Rare]

#InternationalNeonatalScreeningDay is two months away!

🌍 Join us as we start the countdown and raise awareness together.

👉 More info: https://t.co/Q7UHadGJ8N

#NewbornScreening #INSD2026

[Screen4Rare @Screen4Rare]

Did you know? 💡

Ireland began screening for all types of SCID (Severe Combined Immunodeficiency) and for SMA (Spinal Muscular Atrophy) on April 13. 👶🧬

This milestone highlights the importance of early detection as we mark International Neonatal Screening Day on June 28.

🔗 Learn more: https://t.co/Q1uFA4U1DO

#NewbornScreening #EarlyDetection #SCID #SMA

[Screen4Rare @Screen4Rare]

Why do we celebrate International Neonatal Screening Day? 💙

Early detection through newborn screening can change the course of a child’s life, prevent severe health outcomes, and enable timely treatment.

On 28 June, we raise awareness about the transformative potential of newborn screening and celebrate its global impact and achievements.

🔗 Learn more: https://t.co/Q1uFA4Uztm

#NeonatalScreeningDay #NewbornScreening

[Screen4Rare @Screen4Rare]

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: 🔗 https://t.co/irgplXQtPo

#INSD #NewbornScreening #GlobalHealth #EarlyDiagnosis

[Screen4Rare @Screen4Rare]

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

[IPOPI @ipopi_info]

On 12–13 March, IPOPI took part in the ERN RITA General Assembly in Utrecht, contributing to discussions on improving care for people living with rare immunological diseases.

@LeireSolis presented the latest developments on the work of Screen4Rare in the field of newborn screening and also took part in the discussions on the transition of care session.

Dr Nizar Mahlaoui, chair of the MAP, presented the IPOPI RareFind AI pilot project that is being implemented in France and explores how artificial intelligence can support the identification of undiagnosed rare disease patients.

#RareDiseases #PatientVoice

[Screen4Rare @Screen4Rare]

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 🔗https://t.co/irgplXQtPo

#INSD #NewbornScreening #EarlyDiagnosis #RareDiseaseDay

[Screen4Rare @Screen4Rare]

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 💛

👉 https://t.co/8QGs1B22us

#INSD #NewbornScreening