Chair Irish EDS 🇮🇪 Rare Disease Advocate| Rare Ireland |Rare Diseases Ireland| Former Mgt Consultant. Views are my own.
Ireland
Joined October 2017
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All of the team at @rare_ireland are delighted to announce our updated website is now live. We support families affected by rare diseases. 1 in 17 individuals in Ireland, will be affected by a rare disease in their lifetime. Please share.
rareireland.ie
Unfortunately the delay in diagnosis across the EDS cohort is an issue in Ireland too. While awareness of the condition and its comorbidities is improving albeit slowly. Too many patients especially female are being gaslit. #EDS #RareDisease #plwrd
#irishEDS
Anne Micks retweeted
Tickets for Rare Ireland’s first Charity Ball are now on sale. Join us in celebrating rare families in Ireland at what promises to be a fun filled night. Tickets are not €55 and special hotel room rates apply. Contact us for info eventcreate.com/e/rareirelan…
Anne Micks retweeted
Elevate your beauty routine! Magnetic lashes for effortless allure. Get yours now 🛒👇
Anne Micks retweeted
It's time to #GetRareAware!
We need to expand the newborn screening test panel in Ireland. Learn more about this important public health service at our webinar on Thurs Apr 18 at 12.30. Register to attend
eventbrite.ie/e/get-rare-awa…
Anne Micks retweeted
We are thrilled to announce our first Gala Ball. Tickets on sale soon #SaveTheDate
Anne Micks retweeted
Government to scrap controversial Green Paper on disability reform after backlash independent.ie/irish-news/po…
Anne Micks retweeted
Early detection of treatable #rarediseases leads to significant quality of life improvements. Providing treatment when a child is asymptomatic leads to even better outcomes
That's why #NeonatalScreeningMatters and should be prioritised in 2024-2029 🦾
➡️ bit.ly/3TzyYzK
In Feb, @DonnellyStephen said he recognised that in excess of 1M people are directly affected by rare diseases in Ireland today, yet a genetics lab is not factored into a “world class” €2bn+NCH. A failure for our children. @BernardGloster @CcoHse @SimonHarrisTD @rareireland
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
#Iamnumber17 campaign, highlighting Rare Diseases is now on display in Stephen’s Green, for the public to learn about the 17 lives from the 300k families affected by #RareDiseases in Ireland.
#individuallyrarecollectivelycommon
#StrongerTogether
@rareireland
@RareDiseasesIE
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
Take a look at the statistics from @ULHospitals, 2 women lost their lives since January. Not acceptable the continuous deliberate neglect. Too many lives lost in #UHL ED.@DonnellyStephen @BernardGloster
#autonomicdysfunction in #EDS can often lead to fainting episodes that cannot be predicted. It is difficult to explain especially if on your own. Please be compassionate
#edsawareness
#RareDisease
#iamnumber17
@CiaraMicks
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…
I am very happy to share this video. Thank you to everyone who helped in some way, be it big or small. Much done, more to do. #TreatCureMSD youtu.be/zXMDyJ0bX3c?si=wIej…
Anne Micks retweeted
Rare Disease day cold water dip. Join us and our rare children as we dip in Portmarnock and Spanish Point to raise awareness for rare diseases and much needed funds for Rare Ireland. #RareDiseaseDay #StrongerTogether #RareDiseaseAwareness
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
My interview with @rtenews for the #iamnumber17 campaign. I couldn’t be prouder of everyone involved 👏🏻👏🏻👏🏻
@rareireland
@RareDiseasesIE
@TakedaPharma
Anne Micks retweeted
I participated in the @UCD_CHAS festivities to mark the #InternationalWomensDay 2024. Being surrounded by individuals passionate about advancing science and empowering future generations was truly inspiring. Wishing you all a very happy #InternationalWomensDay on Sunday!
Anne Micks retweeted
Stay tuned for more information about a rare disease campaign we are involved in, launching tomorrow, February 7th.
Did you know 1 in 17 Irish people are living with a rare disease? #IAmNumber17 @RareDiseasesIE @22Q11_Ireland @KasiaWhysall @LesMartin_Ire @annedmicks
Anne Micks retweeted
Little Niamh on her way to Dublin for the official launch of #IamNumber17 looking forward to meeting her and her mum @KasiaWhysall
Excited girl on the train to Dublin for the launch of rare disease awareness campaign #1in17 @rareireland #IamNumber17
Delighted to participate in the @IFNAUKIreland Webinar.
Sharing lived experience.@rareireland @RAiNAllIreland
@RareDiseasesIE
#genetics
#genomics
#iamno17
Genetics and Genomics. @IFNAUKIreland Webinar Series ucd-ie.zoom.us/webinar/regis…
Presenters: @sujas15, @annedmicks, @KCalzone & @a_j_mcknight.
February 19th 12:30-14:00.
