22Q11 Ireland
@22Q11_Ireland
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Parent group raising awareness of #22q Working toward integrated care for 22qDS & individually rare collectively common #RareDiseases. Tweets AnneL CHY 17647
Ireland
Joined July 2013
#Team22q won the HSE Excellence Award for demonstrating that parental liaison and putting young people at the centre of their healthcare decision is having positive outcomes for people living with rare disease. Watch a video about the project here:
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@911poet That would be fine except that 'freedom of speech' has now turned into ugly vitriolic hateful free-for-all speech with dis/misinformation the order of the day.
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22q11.2 Deletion Syndrome: Common but Underrecognized #ThinkGenetics and #GetRareAware
#RareDiseaseDayFeb28
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@VGeiran @irishexaminer "It's unclear how many individuals with mental illness, LD and speech and language difficulties are in contact with the Irish criminal justice system, but some provisional statistics indicate that between 16% and 27% of imprisoned males and between 41% and 60% females"
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LD/ID and mental ill-health often go hand-in-hand. Not all disabilities are visible and most are misunderstood, especially those that fall into the so-called (and largest) 'mild' category. @irishexaminer
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It's extraordinary to think that in the USA children with learning disabilities can be ARRESTED in elementary school. @irishexaminer
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Individually rare collectively common #RareDiseases
#RareDiseaseDay2025
6000+ conditions. 🏥 300 Million people. 🗺️ One community. 🫂 Through raising awareness, we can bring attention to the research, care and effort needed to support those living with rare diseases. Use our infographics:
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Individually rare collectively common #RareDiseases
#RareDiseaseDay2025
Join us in marking #RareDiseaseDay throughout February! Share your story, share rare facts, raise awareness of the challenges people face in accessing diagnosis, treatment, therapies and care. #LightUpForRare #ShareYourColours
@rarediseaseday
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@camraredisease
#MakingItHappen with patient-driven initiatives. #22qDS a most 'common' #RareDisease
#RareDiseaseDay2025
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RT @camraredisease: Did you know only 5% of 10,000+ rare diseases have a treatment? Our Companies Forum unites passionate experts from biop…
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Really looking forward to attending this talk next week by the legend that is Austin O'Carroll.
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Really looking forward to attending this talk next week by the legend that is Austin O'Carroll.
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Last year, Genetic Alliance UK released a report with case studies of people living with rare conditions and healthcare professionals who deal with the conditions and care coordination. Read the report, Stats behind the Stories:
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Our ‘I support Rare Disease Day’ pledge cards can be posted on social media, printed for use at your events, or distributed at school and at work. And guess what? They are available in several different languages! Don’t forget to show us how you use them:
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