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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! !!

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...

SMA screening in Ireland's heel-prick has not been implemented. Stephen Donnelly 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

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/en/press-relea…

No thought for pedestrian safety Can't access the button for the traffic lights on the Grange side + uneven surface Cllr Elisa O'Donovan Cllr Daniel Butler Cllr Joe Leddin John Moran, Mayor of Limerick Conor Sheehan TD Cllr Shane Hickey-O'Mara Senator Maria Byrne Maria Donoghue, Ind Councillor Limerick City West Councillor Michael Collins Cllr Sarah Kiely Limerick Council - Comhairle Luimnigh

SMA screening for newborns is still not in place in Ireland. Stephen Donnelly pledged to implement it in 2024, but with just 8 weeks left this year, urgent action is needed to #BringSMAtoHeel

Worth reading, not surprising that he still hasn't apologised, taken accountability or shown any remorse.

Billy Kelleher MEP taking a lead on newborn screening for rare diseases. We need Department of Health NSAC, HIQA HTA and HSE Ireland newborn screening to engage more with European colleagues to expedite expansion of newborn screening in Ireland. Leverage all opportunities! Suzanne Crowe

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 Disease Clinical Trial Network, Ireland CancerTrialsIreland 🌈 Health Research Charities Ireland - HRCI Rachel Crowley

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

Finally 300,000 people living with #raredisease in #Ireland recognised in budget line. An important day for the community. Thanks Vicky Rare Diseases Ireland & volunteers who fought for this - never give up! RARE Ireland IPPOSI EURORDIS-Rare Diseases Europe 22Q11 Ireland Pádraig O'Sullivan TD John Lahart TD

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

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.

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 Bernard Gloster Dr Colm Henry, CCO HSE Ireland Chief Medical Officer Stephen Donnelly Simon Harris TD David Cullinane T.D. adelaide.ie/wp-content/upl…

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 Children's Health Ireland HSE Mid West Rare Diseases Ireland lindsey crum #owarrior #omphaloceleawareness

A special #Caturday this week: today is the 14th anniversary of my arrival on Downing Street.

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

DARVO: The Narcissist’s Playbook When exposed, malignant narcs don’t apologize or take an ounce of accountability—they DARVO. 🔹 Deny – “That never happened.” They strip critical context, obfuscate facts, and brazenly rewrite reality to erase their wrongdoing. Because they are

New molecular technology required for SCID and SMA screening – HSE Rare Diseases Ireland Children's Health Ireland SMA Ireland #heelpricktest #rarediseases medicalindependent.ie/in-the-news/ne…

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 HSE Ireland to bring newborn screening up to at min EU average levels Jennifer Carroll MacNeill TD Ellen Crushell Bernard Gloster