Anne Micks
312 posts
@annedmicks
Chair Irish EDS 🇮🇪 Rare Disease Advocate| Rare Ireland |Rare Diseases Ireland| Former Mgt Consultant. Views are my own.
I read a paper that found half of patients surveyed had a 14 year delay in diagnosis of EDS / HSD. A quarter had a 28 year delay. This constitutes the longest delay in diagnosis in rarer diseases according to this research. hEDS isn’t rare but clearly it’s rarely diagnosed 😞
We are hosting an event with @InclusionIre for children with intellectual disability of all ages to help develop accessible resources for when they are accessing healthcare. Register now: eventbrite.com/e/866102665387… Online Event: eventbrite.com/e/875915184897… @LucyBray9
🎉 Exciting discussions at the kick-off of event for #EUYouthWeek in the European Parliament! 💬 Join the vibrant panels diving deep into topics of youth empowerment, engagement, and beyond! Don't miss out on the conversation! Tune in live 👉youth.europa.eu/youthweek_en
The stark reality of monumental failure by both CHI & HSE leadership to prioritize our most vulnerable citizens - those with rare diseases. No plan for delivery of appropriate genetic services for our country. Speechless 😶 @DonnellyStephen @CMOIreland @BernardGloster @CcoHse
So proud of Ciara, with all she has to cope with living with chronic condition, she always manages to stay positive. Delighted to be part of #iamnumber17 #RareDisease @RareDiseasesIE @rareireland
"In terms of solutions and how we can improve this, if we look at the research, we know that overcrowding in EDs leads to significant patient harm. "But specifically, we need pre-action protocols," Professor Colleran stressed.
Fainting in public tends to make people panic, however normal it might be for you - while also often leaving you not up to explaining. Having a card to do the explaining can make a big difference. #PoTS #OI #AutonomicDysfunction Card from stickmancommunications.co.uk/product/fainti…
My interview with @rtenews for the #iamnumber17 campaign. I couldn’t be prouder of everyone involved 👏🏻👏🏻👏🏻 @rareireland @RareDiseasesIE @TakedaPharma
@nikkidonline @DonnellyStephen @chqdublin @hanovertweets @rareireland @22Q11_Ireland @raising @TakedaPharma @RAiNAllIreland @RareDiseasesIE Thanks Nikki you too 🙏🏻
