Top Tweets for #Screen4Rare
⏰ Don’t forget! The next #Screen4Rare event takes place at the European Parliament.
Hosted by MEP @TomislavSokol and supported by the MEP Alliance for Rare Disease Newborn Screening, this high-level discussion will focus on how Europe can lead on early diagnosis, equity and innovation in Rare Disease care.
📌 Places are limited – secure your spot today!
🔗 Register here: https://t.co/Wdl4R7jJOC
#RareDiseases #NewbornScreening #EU4Health #HealthInnovation
🌐 A strong close by @BillyKelleherEU, reminding us of the progress and the work still ahead.
Together, we’re building a future where no child is left undiagnosed. Let’s keep up the momentum.
#NewbornScreening #S4R #Screen4Rare
🩺Dr. Peter Schielen (ISNS) presents @Screen4Rare's accomplishments:
- Progress in policy advocacy across Member States
- Strengthening partnerships with ERNs and patient organisations
Looking forward to their next steps!
#RareDiseasePolicy #Screen4Rare #S4R
A message from MEP @brandobenifei on International Neonatal Screening Day 🔊
#Screen4Rare looks forward to the next @Europarl_EN mandate and taking steps to ensure newborns can receive early diagnosis for treatable conditions 🇪🇺
#NeonatalScreeningMatters #INSD
📢 IPOPI at the @Screen4Rare Webinar!
We are excited to announce IPOPI's participation in the ongoing webinar organized by #Screen4Rare, titled "Newborn screening as a life-saving intervention: how should the EU support Member States to enhance their programs?"
This insightful session has the presence of @JohanPrevot, IPOPI's Executive Director, as one of the esteemed speakers and @LeireSolis, Health Policy and Advocacy Senior Manager at #IPOPI, as a moderator of the panel discussion on "Leveraging the success of ERNs to improve newborn screening".
Johan presents the vital role of Screen4Rare, explaining why it exists and the impactful work we are doing.
This webinar is a collaborative effort with @Metab_ERN, @_ERNRITA, and @euro_nmd, bringing together experts and stakeholders to advance newborn screening programs across Europe.
Stay tuned for more updates! 🌍🔬👶
#NewbornScreening #MetaERN #ERNRITA #ERNEURONMD #LifeSavingIntervention #EUHealth #RareDiseases
#Screen4Rare event on Newborn Screening as a Life-Saving Intervention has kicked-off!
@JohanPrevot takes the floor to discuss the origins of #S4R & why we need strong EU support to enhance newborn screening programs
Thank you for joining us!
#INSD #NewbornScreeningMatters
Se ilumina la @Mx_Diputados de color amarillo en conmemoración del Día Internacional del Tamiz Neonatal. Creando conciencia acerca de su importancia por el Interés Superior de la Niñez detección y tratamiento temprano de Enfermedades Raras ##ScreeningNeonatal #INSD #Screen4Rare
Se ilumina la @Mx_Diputados de color amarillo en conmemoración del Día Internacional del Tamiz Neonatal. Creando conciencia acerca de su importancia por el Interés Superior de la Niñez detección y tratamiento temprano de Enfermedades Raras ##ScreeningNeonatal #INSD #Screen4Rare
It's #InternationalNeonatalScreeningDay! Neonatal screening is a game changer in access to timely diagnosis and appropriate treatment for children suffering from serious and sometimes life-threatening disorders. #INSD #Screen4Rare
@IPOPI @ESID @ISNS
Today is the International Neonatal Screening Day (ISND). Join ISND and help ensure that every newborn receives the necessary screenings for a healthy start in life. https://t.co/MSnZvf1ASr #Screen4Rare, #IPOPI, #ESID, #ISNS
#screen4rare has put the spotlight at #EU level on the importance of #newbornscreening in the management of treatable #rarediseases. On the upcoming #INSD let's all join up to make this vision become reality & ensure more equitable access to #NBS across the EU.... & beyond!!
Newborn screening can be life-changing and even life-saving for babies with treatable rare diseases.
On #INSD, let's get #EU decision makers to commit to #equitable access to neonatal screening for babies born in the #EU.
See you on 28 June 👉 https://t.co/fvFrmeMmAu
#WorldPIWeek begins today!
Participating #Screen4Rare members will be discussing how early diagnosis can ensure patients with #PID receive timely treatment and care
Find out more about their policy pledges and why #NeonatalScreeningMatters
👉https://t.co/2LwLkUxTvq
#INSD
"looking perfect on the outside" is a very common issue with individually rare collectively common #RareDiseases
With thousands such conditions and only 9 being screened for in Ireland the vast majority face a tortuous #DiagnosticOdyssey
#Screen4Rare
@griffenniamh
‘We were told that our baby, who from the outside looked perfect, had a rare condition called PKU’ https://t.co/lNiPl1NCKv
Huge thanks @image_magazine @AmandaCasssidy for supporting #PKU community and raising awareness about #PKU #Lifelong #Condition #RareDisease #awareness
@ipopi_info is actively participating today in the #Together4RD event on a new model for collaboration to address areas of unmet need in #rarediseases. Happy to meet again with #Screen4Rare #newbornscreening champion MEP @Kympouropoulos as host of this important meeting!
Great to see these recommendations highlight the value of #newbornscreening and the call for action of #Screen4Rare including the important role of the #ERN Expert Platform for Newborn Screening !
THE MEP INTEREST GROUP CHARTER IS PUBLISHED!
👉 https://t.co/3VE5L0a45d
#MEPsforATMPs
Fabio Candotti, @ESIDsociety President Elect, elaborated on #Screen4Rare activities including several upcoming events in addition to #InternationalNeonatalScreeningDay.
Jim Bonham, @ISNSNeonatal
President, describes the goals of #Screen4Rare at our #InternationalNeonatalScreening event, highlighting projects including:
•The ERN Expert Platform
•The MEP Alliance
•The development of new communications materials about #neonatalscreening
Es #InternationalNeonatalscreeningDay
para crear conciencia sobre #neonatalscreening‼️
La detección neonatal temprana significa:
➡️ Diagnóstico
➡️ Tratamiento adecuado
➡️ Mejor calidad de vida
➡️ Apoyo familiar
➡️ #Screen4Rare
En👇@ipopi_info
https://t.co/AA7TavL8M9
🌍🩸🧬 En ce 28 juin 2022, nous célébrons la seconde journée internationale du dépistage néonatal #INSD. L’occasion pour l’@AssociationIris de rappeler l’importance d’un dépistage précoce des nourrissons sur des maladies fatales, mais curables, telles que le DICS. #Screen4Rare
Ogni anno la vita di 4.000 bambini europei cambia grazie allo #ScreeningNeonatale.
Il report 2021 di #Screen4Rare, il progetto che ha l’obiettivo di garantire che tutti i bambini nati nell’UE possano avere uguale accesso al test.
https://t.co/X7opZYtkFa
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