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
Last Seen Hashtags on Sotwe
minichat
Seen from Germany
realloyalfans
Seen from Turkey
ometv
Seen from United States
animal porn
Seen from Turkey
ShameOnStarSports
Seen from United States
anxiouspanda
Seen from Germany
Aftonproblemau
Seen from United States
baits
Seen from South Africa
bobbyalloway
Seen from United States
minichat() +filter:native_video
Seen from Thailand
Trends for you
Most Popular Users
Elon Musk 
@elonmusk
241.7M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114.4M followers
Donald J. Trump
@realdonaldtrump
111.8M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
90M followers
Taylor Swift
@taylorswift13
83.9M followers
Lady Gaga
@ladygaga
75.4M followers
Virat Kohli
@imvkohli
73.3M followers
Kim Kardashian
@kimkardashian
70.9M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66.3M followers
Bill Gates
@billgates
65.1M followers
Selena Gomez
@selenagomez
63M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers