🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

Disgraceful, it should have never have got to this point. What are you doing to fix these issues? Norma Foley T.D Simon Harris TD

So proud to have played a small part in this and it's wonderful to see hard work paying off

Great to see real on-the-ground progress on this 👏 #Genetics Rare Diseases Ireland 22Q11 Ireland Children's Health Ireland Jobs Children's Health Ireland

Speaking of the need for a comprehensive European action plan on rare diseases at #WODC, experts including our own Raquel Castro emphasised that this is the only way to guarantee the well-being and health of the 30 million people with rare diseases in Europe. #WODC2024

Once this trial is over, Gisele Pelicot should receive every honour in France and the International Women’s award. What she says about shame shouldn’t need saying but she’s used her darkest hours and a global spotlight to do so. She’s extraordinary. bbc.com/news/articles/…

Remembering Garda Info Garda Ciarán Jones who died on duty on this day 2011..he bravely went to warn motorists about dangerous flooding at Ballysmuttan Bridge,Co Wicklow during extreme weather conditions & sadly was swept into the river ..May he Rest In Eternal Peace

One of the most glaring failings has been the fact even though a report sits on #Gov.ie commissioned by the Irish state around the additional cost of living with a disability in Ireland no action has been taken to address this failing. Two Ministers and many Taoiseach later we

To harness their potential to drive #innovation #ERNs must be allowed to collaborate with all stakeholders Only 5% of #RareDisease have treatments & #HUMN - we need to act now Together for Rare Diseases EURORDIS-Rare Diseases Europe Retina International Rare Diseases Ireland ERN-EYE

I think this is the kind of community policing we can ALL get behind. 👏👏 #dublinmarathon #dublincitymarathon

Tried booking this morning over phone as wheelchair accessible tickets can’t be booked online. Was told the kids would have to be seated away from me. Hawk's Well Theatre wheelchair tickets need to be available online and booked as part of group Access For All Ireland The Struggle Is Wheel

Delighted with the new Health Passport for #22q-had to convince #CareCoordinator Wes that I did not in fact have 1 & those blue folders that follow me to all clinic appointments were my own DIY passport🤣 It's such a simple but vital tool 22Q11 Ireland Children's Health Ireland 22q11 Europe

This teacher 'getting things done'... fundraising on a Saturday as the government do not adequately fund primary education.

Which is an issue I've consistently raised to no avail re the new children's hospital...no parking & told get the train ....but such inflexibility when we have no way of knowing if appointments will run to schedule is off putting Iarnród Éireann Children's Health Ireland

Rare Diseases are a significant cause of physical, intellectual, sensory and mental health disabilities #ThinkGenetics and #GetRareAware Univ Hosp Waterford 👏 RARE Ireland Rare Diseases Ireland Rare Disease Clinical Trial Network, Ireland raising_rareness (Lyndsey Walsh) AccidentalAdvocate Dr Suja Somanadhan EURORDIS-Rare Diseases Europe ERN-ITHACA HSE Dublin and South East

So many of us who have a child with additional needs are familiar with the ‘postcode lottery’ that exists for services & support. But….. an actual lottery for school places?? Is this where we’re at in 2025. So devastating for children & families, this is unacceptable every year

Delighted to be at launch of National Genomic Test Directory for Rare & Inherited Diseases. A significant step forward for equitable access to diagnosis & care. Avril Daly 💚 speaking on behalf of PLWRD on the importance of this initiative. Thanks to NGGO!👏👏 Chief Medical Officer Dr Colm Henry, CCO HSE Ireland

In exactly one month’s time, we will be marking #RareDiseaseDay 2025 at European Parliament! 📣 We call on MEPs to show their support for our rare disease community by joining the effort to advance EU-level policy. Learn more: go.eurordis.org/hSwUAr

surveymonkey.com/r/FCTSBTP Highly recommend doingbtgis survey of CDNT structure & delivery of services. Found it in-depth, not geared towards a pre-determined outcome, and plenty of boxes to write additional info