Top Tweets for #NBscreening
"Newborn Screening dramatically improves outcomes in severe childhood disorders by treatment before symptom onset"
#NBScreening
@LesMartin_Ire
https://t.co/zptQdOJn2a
@martina_kennedy @childreninhosp @LucyBray9 @RCSIPaediatric @CHI_Ireland @CRNINI Newborn screening for individually rare collectively common rare diseases.
Electronic health records.
Research with families.
#PPI #ERNs #NBScreening #Research
#NothingAboutUsWithoutUs
@Perinatal_SIG @CHI_Ireland @rareireland @CMRF_Crumlin @HSELive @TheCHF Thanks for tuning in & unless born with a #CHD our #22q babies, in the absence of #NBScreening, are likely on the road to a #DiagnosticOdyssey
We have too many late diagnoses with some reaching adulthood with the diagnosis coming after offsprings.
#RareDiseaseFacts
Some are life-limiting some cause #BirthDefects some are #UltraRare and some, like #22q, are extremely variable & without #NBScreening can be difficult to diagnose.
Our children grow up, they still need supports.
#RareDiseaseDay2023
#RareDad @Lesmart11659095 has done AMAZING work (at huge personal cost) highlighting the need to expand #NBScreening in Ireland. Who's listening?
#GeneTherapy for #MLD
@padraigosull @rareireland
#RareParentConf2022
#NBScreening not available for very most conditions (🇮🇪 screens for 8) hence the #DiagnosticOdyssey for many families. 6000+ rare diseases. Individually rare collectively common affects approx 300,000 people in Ireland 🇮🇪 many of them children.
@LiamoJC @VLambertDCU @PPI_Ignite_DCU @sujas15 @IFNAorg @PKU_Ireland @22Q11_Ireland Unfortunately newborn screening for PKU is not widely available in all countries so some children remain affected, an objective pursued by the ESPKU Cross Party Alliance for PKU.👏 Kuvan is successful for a subgroup of patients with milder PKU. DT remains for the majority here.
#PKU One would think that with a diagnosis via #NBScreening comes appropriate (& up-to-date research) treatments. Ditto most other rare conditions which incidentally most not having newborn screening tests. Only 8 conditions screened for in Ireland.
7000+ rare conditions
Thank you @CallTheMidwife1 for raising much needed awareness of #PKU👏 Incredibly grateful for #LowProtein Dietary Therapy. Sadly treatment accessed by most patients today remains the same as that of 50+ years ago. Patients continue to have significant challenges and unmet needs.
Sad passing of Cathal #RIP sending deepest condolenscences to @Lesmart11659095 Lynda and family. Les is leading a campaign to expand #newbornscreening #ROI that could save many more children #RareDisease @SimonHarrisTD @DonnellyStephen @22Q11_Ireland https://t.co/C4s5T2qCqR
Best Selfie Prize goes to Les Martin 👏 @Lesmart11659095 Thank you Les you touched our hearts ♥️ @rarediseaseday #NetworkIreland #PowerWithin #IWD2020 #backedbyAIB
7000 + rare diseases and counting. With a range of symptoms from life-limiting to common ones, rare diseases are a significant cause of physical intellectual and sensory disabilities. Individually rare collectively common.
#thinkrare #NBscreening
#CathalsLegacy
Thank you Les & Lynda for sharing your story and views on how expanded newborn screening can be support for the thousands of families life with a #Rarediseae @Lesmart11659095
@22Q11_Ireland
@avrilbdaly @2011thilo
@CiaraMcCiara @RareDiseasesIE @AvrilKennan
https://t.co/0tyQHFo2kq
Take time to listen to how we can save 42 children a year from a disease that can be detected and treated at birth @RareDiseasesIE @rareireland #NBScreening https://t.co/e5ZHKNY88j
Sign this petition to introduce 32 extra diseases to Ireland’s newborn screening program!
42children could be saved each year!
Please retweet♥️#NBScreening https://t.co/zeU0uLGs8H
#nbscreening #genomics lowering hc costs hope to families @drcgreenberg @rarediseasefdn #Canada4rare @raredisorders https://t.co/mzNZ25ahxs
#Genomics Transforms Pediatric #RareDisease; By @GarvanInstitute | https://t.co/7hsdOveMvp #SNRTG #BigData #genetics
#aroseknows improve #nbscreening for #1in100 and #pulseox testing saves lives https://t.co/aY2APeP8Eh
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