Screen4Rare @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.org Joined February 2022-
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#NeonatalScreeningMatters as it can mitigate the health, psychological and socioeconomic burden of rare diseases across the world Focus should be on treatable conditions where it is clear that early detection results in significantly improved outcomes 👉bit.ly/3je9JW6
#WorldPIWeek begins today! 🌍 This year, participants will call for early diagnosis & timely access to quality treatment for patients worldwide. Find out more about their policy pledges and why #NeonatalScreeningMatters 👉 bit.ly/3Tx50wm #SeeTheUnseen #INSD
Positive newborn screening news coming from 🇪🇸 @sanidadgob has announced that it is looking into adding 11 new diseases to its #neonatalscreening panel to reduce inequities between regions! #INSD #neonatalscreeningMatters sanidad.gob.es/gabinete/notas…
Positive newborn screening news coming from 🇪🇸 @sanidadgob has announced that it is looking into adding 11 new diseases to its #neonatalscreening panel to reduce inequities between regions! #INSD #neonatalscreeningMatters sanidad.gob.es/gabinete/notas…
It is great to see Belgium supporting the creation of a European action plan for rare diseases 🇧🇪 We urge EU policymakers to make #neonatalscreening a central part of any #raredisease initiative. @alexanderdecroo @EU2024BE euractiv.com/section/health…
Delighted to see #ERNs recognised in new @EU_Health Joint Action as key tools to diagnose, treat & care for #RareDiseases through € 18 million Since 2021, we have partnered with @_ERNRITA and @Metab_ERN on the expert platform for newborn screening 👉 bit.ly/3TDfs7d
In 2021, how many babies were identified with a rare disease as a result of #neonatalscreening? @ESIDsociety @ipopi_info @ISNSNeonatal @SMAEurope
Why do we celebrate #INSD? 👉Raise awareness about newborn screening 👉Encourage scientific advances in newborn screening 👉Support the exchange of information & best practices #NeonatalScreeningMatters across the world! bit.ly/3mQjcEV
@Screen4Rare @ESIDsociety @ipopi_info @ISNSNeonatal @EU2024BE @crevits @DepartementWVG @vlaamseoverheid Congratulations 🙌🏽
Newborn screening can be a life-saving intervention for when it comes to conditions such as severe combined immunodeficiency Great news for PID patients in the Flemish region as #SCID will be added to the region's programme by the end of 2024 👏
Early detection of treatable #rarediseases leads to significant quality of life improvements. Providing treatment when a child is asymptomatic leads to even better outcomes That's why #NeonatalScreeningMatters and should be prioritised in 2024-2029 🦾 ➡️ bit.ly/3TzyYzK
🕜 3 MONTH COUNTDOWN On 28th June, we will be celebrating #InternationalNeonatalScreeningDay! Follow us to find out why neonatal screening matters! #SeeTheUnseen bit.ly/3y055ir
Why should you celebrate #INSD on 28 June? 👉 It raises awareness about #neonatalscreening 👉It encourages scientific advances in screening programmes 👉It supports the exchange of information #SeeTheUnseen bit.ly/3y055ir
For treatable rare disorders, the early detection offered by #neonatalscreening can be life-changing and sometimes life-saving. Join us on #INSD to find out why we need to #SeeTheUnseen. More info 👉 bit.ly/3TzyYzK @ESIDsociety @ipopi_info @ISNSNeonatal @SMAEurope
#NeonatalScreening can be a life-changing and life-saving intervention for babies with treatable rare diseases On #INSD, we are calling on policymakers around the globe 🌍 to commit to #equitable access to neonatal screening. See you on 28 June 👉 bit.ly/3TzyYzK
Neonatal screening is a game changer when it comes to accessing timely diagnosis and appropriate treatment for those with serious and sometimes life-threatening disorders. This is why we celebrate #INSD
In 2021, 38,000 newborn babies were diagnosed with a rare disease as a result of #neonatalscreening. On 28 June, we will highlight the importance of #neonatalscreening for those living with a rare disease. Find out more 👇 bit.ly/4bqsHPB #INSD
Neonatal screening has been a game changer in providing a timely diagnosis to those suffering from a rare disease. Join us on 28th June, as we celebrate International Neonatal Screening Day. #NeonatalScreeningMatters #SeeTheUnseen bit.ly/3y055ir
For those living with a rare disease, finding a diagnosis can often be difficult. Neonatal screening for rare diseases can help to speed up this process for patients. Visit our website to learn more👇 bit.ly/4bqsHPB #NeonatalScreeningMatters #SeeTheUnseen
Early detection of treatable rare diseases can lead to an improved quality of life and #wellbeing, with asymptomatic treatment resulting in even better outcomes. This is why we need to #SeeTheUnseen! 👇 bit.ly/4bqsHPB #NeonatalScreeningMatters #INSD
On the rarest day of the year, let's remember that newborn screening for #rarediseases can be: ☝️Life-changing and sometimes life-saving ✌️Cost-effective Find out what neonatal screening is all about: bit.ly/4bqsHPB #RareDiseaseDay #INSD
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The IPOPI Board Members couldn't be left out of the #WorldPIWeek! They got together to strike the Y pose to raise awareness for #primaryimmunodeficiency. Join them in spreading #PICtureAwareness!💙 #IPOPI
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Ίσως η πιο γελοία υποψηφιότητα σε αυτές τις ευρωεκλογές. ΜΑΥΡΙΣΤΕ ΤΟΝ.
Παπούτσια δεν μπορούμε να λιώσουμε όλοι. Κάποιοι από εμάς λιώσαμε όμως τα λάστιχα των αμαξιδίων μας. Γεννηθήκαμε και μεγαλώσαμε σε αυτή την κοινωνία. Είμαστε κομμάτι της! Δεν μπήκαμε σε αυτήν όψιμα αποβιβαζόμενοι από το ιδιωτικό μας σκάφος. #Κασσελάκης
What a beautiful journey these last 5y have been, advocating for better health and well-being for all 🇪🇺 & representing 🇵🇹 will always be one of the greatest honors of my life. Thank you all who have been a part of it, I’m truly thankful🙏Another mission lies ahead w/@PSMadeira✊
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What would you say?
In 2021, how many babies were identified with a rare disease as a result of #neonatalscreening? @ESIDsociety @ipopi_info @ISNSNeonatal @SMAEurope
@Screen4Rare @ESIDsociety @ipopi_info @ISNSNeonatal @EU2024BE @crevits @DepartementWVG @vlaamseoverheid Congratulations 🙌🏽
@Screen4Rare @LeireSolis @ESIDsociety @ipopi_info @ISNSNeonatal @SMAEurope @EU2024BE @crevits @DepartementWVG @vlaamseoverheid It only took us 13 years.
On March 20, I am hosting an event ‘Navigating Diagnostics Through the Lens of the Pharmaceutical Package and Beyond’ in the European Parliament. Experts from @EU_Commission, @SMAEurope and @Screen4Care will discuss the importance of early screenings for the identification of…
Dr @VirgilDalm, from Erasmus MC, provides a compelling overview of how #PIDs often have symptoms linked to mental health problems. #PIDForum
Now, Rosalind Fisher, @INGID_Tweets President, sheds light on the vital role nurses play in accompanying #PID patients throughout their lives. 👩⚕️ #PIDForum
As #PIDForum concludes, our hosts @MaxovaRadka, @TomasZdechovsky & @estrella_dura reaffirm their support for the #primaryimmunodeficiency community. We are grateful for your help and eager to continue our work for the well-being of #PID patients and their families! #PIDForum
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