Edwina Wrenn O'Connell
@MsEdwina
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Irish Exomphalos / Omphalocele Warrior. I set up and run the only Irish Omphalocele / Exomphalos support group Mom of three 💙💜💙 https://t.co/qDyE3ZJZyA
Limeick , Ireland
Joined June 2009
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10 years ago today I set up the only support group in Ireland for parents and OAdults. It has been an honour to run it and be part of everyones journey 🖤🤍#omphalocele #exomphalos #owarrior #support @rare
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Never ending delays but know HSE team are getting technologies up & running Look forward to more tests being quickly reviewed & approved by #NSAC & implemented by @HSELive to bring newborn screening up to at min EU average levels @CarrollJennifer @ECrushell @BernardGloster
New molecular technology required for SCID and SMA screening – HSE @RareDiseasesIE @CHI_Ireland @SMAIrelandCom #heelpricktest #rarediseases
https://t.co/mtmFXu73qV
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New molecular technology required for SCID and SMA screening – HSE @RareDiseasesIE @CHI_Ireland @SMAIrelandCom #heelpricktest #rarediseases
https://t.co/mtmFXu73qV
medicalindependent.ie
SCID and SMA screening. The introduction of new molecular technology to the National Newborn Bloodspot Screening Laboratory (NNBSL) is...
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10 Traits of a Malignant Narcissist 1️⃣ Narrative Control – The kings of spin, they masterfully manipulate language, misrepresent facts, remove context, and word-salad their way around accountability. 2️⃣ Messiah Complex – They frame their personal ambitions as a selfless mission
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A special #Caturday this week: today is the 14th anniversary of my arrival on Downing Street.
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Today is Omphalocele Awareness Day. Omphalocele is also known as Exomphalos. It is a rare abdominal defect. I was born with it weighing 3lbs 3oz 35 years ago in #Limerick @CHI_Ireland @HSEMidWest @RareDiseasesIE @cruml
#owarrior #omphaloceleawareness
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A sobering read - impact on families of poorly resourced genetics service is devastating, not to mention the needless risks for our health service. We must do better @BernardGloster
@CcoHse
@CMOIreland @DonnellyStephen
@SimonHarrisTD @davidcullinane
Our report on gaps in genetic services is now available online from our funders @AdelaideHealthF website. Thank you to them for trusting us to deliver. Míle buiochas to @AlanaJWard8 & @DebbyLambert14 for being great co-investigators. Have a read
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Despite promises, SMA screening for newborns has not yet been implemented in Ireland. As we approach end of 2024, time is running out to fulfil this vital commitment. Swift action needed to ensure early detection & prevent devastating consequences for newborns and families.
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SMA screening for newborns is still unavailable in Ireland. Despite a commitment to roll out testing in 2024, time is running out. With just 6 weeks left, urgent action is required to fulfil this promise and protect newborns' health. Newborn babies cannot afford to wait any
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Finally 300,000 people living with #raredisease in #Ireland recognised in budget line. An important day for the community. Thanks Vicky @RareDiseasesIE & volunteers who fought for this - never give up! @rareireland @IPPOSI @eurordis @22Q11_Ireland @padraigosull @JohnLahart
EXCELLENT news for people living with #RareDiseases in Ireland. Thank you to all the advocates, PLWRD, care givers, healthcare professionals, industry and elected representatives who have pressed for transformation in rare disease care in Ireland. #StrongerTogether #IamNumber17
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EXCELLENT news for people living with #RareDiseases in Ireland. Thank you to all the advocates, PLWRD, care givers, healthcare professionals, industry and elected representatives who have pressed for transformation in rare disease care in Ireland. #StrongerTogether #IamNumber17
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Welcome news - Clinical Trials improve the lives of people living with rare diseases, by enabling development of new treatments (drugs, devices, procedures & processes). Without trials healthcare services comes to standstill. @rare_trial @cancertrials_ie @HRCIreland @rachsail
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@BillyKelleherEU taking a lead on newborn screening for rare diseases. We need @roinnslainte NSAC, @HIQA HTA and @HSELive newborn screening to engage more with European colleagues to expedite expansion of newborn screening in Ireland. Leverage all opportunities! @itsthatgirlsuzi
🌎 Opening Remarks by MEP Billy Kelleher Early detection can transform lives. We need to ensure Member States have the right information to take informed decisions on which treatable #raredisorders should be included in their newborn screening panels. #NewbornScreening
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Worth reading, not surprising that he still hasn't apologised, taken accountability or shown any remorse.
The mother of a man who was assaulted by Kyle Hayes has said her 'world fell apart' after the incident. Elaine McCarthy added that the incident impacted on the wider family and that her son Cillian has been 'forgotten' about in the coverage. Read more:
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SMA screening for newborns is still not in place in Ireland. @DonnellyStephen pledged to implement it in 2024, but with just 8 weeks left this year, urgent action is needed to #BringSMAtoHeel
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No thought for pedestrian safety Can't access the button for the traffic lights on the Grange side + uneven surface @elisaodonovan @DanielButlerFG @JLeddin @moranjohna1 @ConorSheehan93 @ShaneHickeyOM @maria16byrne @mariadonoghue24 @cllrmcollins @sarahleekiely @LimerickCouncil
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Details emerging on #budget2025 spending plans for PLWRD: providing resources to improve care coordination & strengthening collaboration with international expertise This investment will begin to lay foundations upon which RD Strategy will be implemented
gov.ie
Rare diseases are defined as having a prevalence of fewer than five cases for every 10,000 persons
We welcome commitment in #budget2025 to fund #raredisease strategy development, implementation of strategy, newborn screening, genetics & genomics, organ transplant and new medicines. First time in memory that rare diseases are called out in budget. Devil is in the detail now...
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SMA screening in Ireland's heel-prick has not been implemented. @DonnellyStephen committed to newborn screening for #SMA in 2024, but with only 11 weeks left in the year, there’s no time to lose. We need action now—newborn babies can’t afford to wait! #BringSMAtoHeel
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We welcome commitment in #budget2025 to fund #raredisease strategy development, implementation of strategy, newborn screening, genetics & genomics, organ transplant and new medicines. First time in memory that rare diseases are called out in budget. Devil is in the detail now...
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Average time to diagnosis 6.1 yrs in Ireland as opposed to 4.9 in Europe. Risk factors for increased diagnostic delays include symptom onset in childhood, especially in first 2 years of life, and being female. Lots of opportunities for improvement! !!
@IrishSocGen Good luck Ceri! @RareDiseasesIE
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