A multi-stakeholder platform launched by IPOPI, ISNS and ESID aiming to exchange knowledge and best practices on newborn screening for rare diseases.
Joined February 2022
- Tweets 364
- Following 116
- Followers 234
- Likes 693
211 Photos and videos
Jun 10
๐ง Quiz time!
โExpanding the panelโ
A researcher helped introduce technologies that enabled screening for dozens of conditions rather than just one.
๐ถ๐งช Which technology enabled this expansion?
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X-ray imaging
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Tandem Mass Spectrometry
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Ultrasound
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Electrocardiography
0 votes โข Final results
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Screen4Rare retweeted
Jun 4
Have you registered yet for the upcoming IJNS Journal Club on the ISNS General Guidelines for Neonatal Bloodspot Screening 2025?
Register here so you donโt miss this important event:
us02web.zoom.us/webinar/regiโฆ
Newborn Screening Saves Lives!
#INSD #NeonatalScreening
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Jun 8
๐ก Did you know?
The inclusion of PKU in newborn screening programs marked a turning point in rare disease care, demonstrating how early detection can prevent serious complications and improve lives.
A small test. A lifelong impact.
#InternationalNeonatalScreeningDay #Screen4Rare #PKU
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Jun 3
๐ As we prepare for International Neonatal Screening Day, we invite you to share your upcoming activities, campaigns, and initiatives ๐
๐ฉ Submit your plans here: bit.ly/3WccQwQ
#INSD2026
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May 28
One more month to go until International Neonatal Screening Day ๐๐ถ
Together, letโs raise awareness of the importance of #NeonatalScreening for every newborn โจ
#INSD #NeonatalScreeningMatters
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May 25
โOur sonโs disorder was identified thanks to newborn screening.โ ๐๐ถ
Behind every early diagnosis is a family whose life changed forever โ 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 ๐๐ฉบ
#INSD2026 #NewbornScreening #RareDiseaseAwareness
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May 21
๐ฉบ 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.
๐ฌ Newborn screening is a simple but powerful public health program that can detect rare conditions before symptoms appear โ giving families the chance for earlier diagnosis, faster treatment, and better outcomes.
๐ Expanding access to comprehensive newborn screening can change โ and save โ lives. Early detection matters.
๐ lnkd.in/gZzUn9JP
#NeonatalScreeningMatters
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May 18
๐ง Quiz time!
โA silent conditionโฆโ ๐ถ Newborn diagnosed with Phenylketonuria โ no symptoms. What prevents complications?
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Surgery
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A special diet
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Antibiotics
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No treatment needed
0 votes โข Final results
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May 11
๐ง Quiz time!
โAn abnormal resultโฆ what does it mean?โ ๐ถ Newborn screening comes back abnormal. Parents worry: โIs our baby sick?โ
Whatโs true?
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Baby has the disease
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Screening gives diagnosis
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More test are needed
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Ignore the result
0 votes โข Final results
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May 13
โ
Answer: Screening isnโt a diagnosis; it flags babies who need further testing.
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May 13
Early detection means early action โจ Through #NeonatalScreening, newborns with treatable rare disorders can access life-saving care before symptoms develop ๐
More on #INSD ๐ lnkd.in/gZzUn9JP
#NeonatalScreeningMatters #NewbornScreening #RareDiseases
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May 7
Letโs turn awareness into action ๐
International Neonatal Screening Day (#INSD) is an opportunity to highlight the importance of screening from day one.
Tell us how you are taking action: bit.ly/3WccQwQ
#INSD2026
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May 4
๐ถ 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.
๐งฌ 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.
๐ lnkd.in/gZzUn9JP
#INSD #NewbornScreening
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Apr 28
#InternationalNeonatalScreeningDay is two months away!
๐ Join us as we start the countdown and raise awareness together.
๐ More info: lnkd.in/ejB_cCJV
#NewbornScreening #INSD2026
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Apr 22
Did you know? ๐ก
Ireland began screening for all types of SCID (Severe Combined Immunodeficiency) and for SMA (Spinal Muscular Atrophy) on April 13. ๐ถ๐งฌ
This milestone highlights the importance of early detection as we mark International Neonatal Screening Day on June 28.
๐ Learn more: lnkd.in/ejB_cCJV
#NewbornScreening #EarlyDetection #SCID #SMA
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Apr 16
Why do we celebrate International Neonatal Screening Day? ๐
Early detection through newborn screening can change the course of a childโs 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.
๐ Learn more: lnkd.in/ejB_cCJV
#NeonatalScreeningDay #NewbornScreening
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Mar 19
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. ๐
Learn more: ๐ lnkd.in/gZzUn9JP
#INSD #NewbornScreening #GlobalHealth #EarlyDiagnosis
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Mar 13
๐ Screen4Rareโs work was highlighted at the ERN RITA General Assembly.
Mar 13
On 12โ13 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
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