Marfan Ireland 🇮🇪 @MarfanIreland
Support Group for patients, families and friends affected by Marfan Syndrome and related disorders in Ireland *we are not doctors and don't pretend to be!* marfan.ie Ireland Joined July 2012-
Tweets1K
-
Followers499
-
Following178
-
Likes612
Seems like a no-brainer ! Knowledge is power.
Seems like a no-brainer ! Knowledge is power.
Thank you for highlighting this shocking matter Deputy Naughton. Can we implore you to discuss this oversight / error urgently with @SimonHarrisTD when he becomes Taoiseach ? There are life saving implications for us in the Care disease community not having such a basic facility.
Thank you for highlighting this shocking matter Deputy Naughton. Can we implore you to discuss this oversight / error urgently with @SimonHarrisTD when he becomes Taoiseach ? There are life saving implications for us in the Care disease community not having such a basic facility.
Very important we all know how crucial it is to have antibiotic cover when getting dental procedures, even deep clean, scale and polish. If in doubt, ask ! 🙋 🙋♀️ 🙋♂️
Very important we all know how crucial it is to have antibiotic cover when getting dental procedures, even deep clean, scale and polish. If in doubt, ask ! 🙋 🙋♀️ 🙋♂️
This is truly shocking ! How can this decision be justified ? It is at best short sighted or at worst negligent and life threatening 😡 😤
This is truly shocking ! How can this decision be justified ? It is at best short sighted or at worst negligent and life threatening 😡 😤
Very useful and informative
Dr. Bowen helps us better understand the anatomy of the aorta and aortic aneurysms. Check out his video. buff.ly/3wYvqQm #Marfan #MarfanSyndrome
30 years of annual #Echocardiography told me my #Aorta was normal. Within 30 mins of arriving at hospital by ambulance with sudden onset, severe chest pain, a CT Aorta diagnosed a 6cm #Aneurysm & an acute Type B #AorticDissection. This undoubtedly saved my life. @RCRadiologists
30 years of annual #Echocardiography told me my #Aorta was normal. Within 30 mins of arriving at hospital by ambulance with sudden onset, severe chest pain, a CT Aorta diagnosed a 6cm #Aneurysm & an acute Type B #AorticDissection. This undoubtedly saved my life. @RCRadiologists
300 million lives, 300 million stories that aren't being told. Today, on #RareDiseaseDay, we stand united with patients, families, & #healthcare professionals around the world to shine a light on #rarediseases. #shareyourcolours #LightUpForRare #Awareness @rarediseaseday
@avrilbdaly chairing our first session of our #RareDiseaseDay conference. @eurordis @Retina_Int
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
#RareDiseaseDay has arrived on a chilly but bright morning @farmleighOPW, Phoenix Park, Dublin. Thank you for opening this beautiful venue for us today, on Rare Disease Day in a Leap Year. Last Leap Year we were with @PresidentIRL in Áras an Uachtaráin, another wonderful venue
Last day of #marfansyndromeawarenessMonth on the 29th of February. It’s #rarediseaseday2024 on the rarest of days. Let’s celebrate Rare - stronger together ! @RareDiseasesIE @rarediseaseday @RareConnect @RareDiseases @rarediseaseuk @eurordis @vascern
Second last day of #MarfanAwarenessMonth. We hope you found the information useful and it helped spread awareness. Have you ever heard of SGS or are you looking for more information ? Check out @MarfanFdn on #MarfanSyndrome or other related disorders. @RareDiseasesIE @vascern
So tragically sad and so tragically unnecessary. This shouldn’t still be happening. YOU can make a difference. YOU need to help spread awareness and information. Sadly, there are 100s of other Micahs out there. Please help SAVE their lives
So tragically sad and so tragically unnecessary. This shouldn’t still be happening. YOU can make a difference. YOU need to help spread awareness and information. Sadly, there are 100s of other Micahs out there. Please help SAVE their lives
Hear hear !
Marfan Syndrome and Ehlers-Danlos Syndrome have a number of symptoms in common. Both are Connective Tissue disorders and considered to be rare diseases. @Eds4Ire @EDSIreland @EDSawareness1 @RareDiseasesIE @vascern Please LIKE & RT - you'd never know who you could be helping!
Marfan Syndrome has a lot of similar symptoms to Loeys-Dietz Syndrome. As such we are more than happy to provide help, advice & support to anyone with LDS. Don't forget to LIKE & Share to post - you'd never know who you’re helping! @LDSFoundation @LDSFCanada @RareDiseasesIE
Our stylish sticker alerts people to the signs and symptoms of Marfan Syndrome. Make Marfan Matter and Make the Message Stick! Order yours today! tinyurl.com/epv2nm2t
Great visual too help see the signs and raise awareness
Great visual too help see the signs and raise awareness
Brilliant 👏🙌
Marfan Trust @MarfanTrust
2K Followers 958 Following Founded in 1988, the Marfan Trust supports patients & funds research into the cause & prevention of Marfan syndrome, a connective tissue disorder.
SIMA Asociación @SIMA_Asociacion
538 Followers 465 Following #SIMA es una Asociación Nacional sin ánimo de lucro, formada por los afectados por el #SíndromedeMarfan y sus familiares. Más de 260 familias
TheMarfanFoundation @MarfanFdn
5K Followers 2K Following The Marfan Foundation works to save lives and improve the quality of life of individuals with Marfan syndrome and other genetic aortic conditions.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Loeys-Dietz Syndrome @LDSFoundation
922 Followers 81 Following Encouraging education, fostering research, and providing support for the Loeys-Dietz community.
Gareth Owens @Icarus1054
1K Followers 1K Following #AorticDissection survivor thx to @NHSBartsHealth. Dacron inside by @TerumoAortic. #PatientLeader, Chair @AorticDissectUK & the global @THINK__AORTA campaign.
Aortic Dissection Awa.. @AorticDissectUK
3K Followers 2K Following The national patient charity for #AorticDissection. Raising awareness, providing support, improving care, enabling research. Registered charity number: 1198617
VASCERN @vascern
2K Followers 636 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Stickman Communicatio.. @stickmancrips
7K Followers 6K Following Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.
RARE Ireland @rareireland
1K Followers 3K Following We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
Séimí Ó Deóraidh�.. @JamieDorrian1
261 Followers 500 Following if you see me post an indirect assume its for you
Rare Disease Clinical.. @rare_trial
736 Followers 1K Following HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core
Fergus McDonnell @Fergus13254
10 Followers 23 Following
Emmanuella Wigg @Emmanuella57317
78 Followers 5K Following
Ciara Shepard @CiaraShepa4620
9 Followers 656 Following
Rhona @rmsavage4
19 Followers 167 Following
Natasha Vaney @NatashaVaney
1 Followers 67 Following
Christina van der Kam.. @christinavandk
369 Followers 915 Following CSR 🙏🏻Sustainability 🌿 Music 🎶 Water 💧 Politics 💜 Opinions entirely my own - I think.
Grenville Richard Ske.. @Ric843Skelton
858 Followers 2K Following A father grandad ex squaddie stroke survivor an Englishman and woken up. 14 grandkids, 4 granddaughters suffer with EB. Dad to the best pro boxer in cumbria
catherina mc garry @CatherinaMc
2 Followers 23 Following
hailong zhang @AsprinHailong
0 Followers 56 Following
jennifer lesh fleck @jen_lesh_fleck
2K Followers 3K Following a refurbed robot-zombie writer: @TheSunMagazine @The_Arcanists @FatalFlawLit @mag_meta @CosmicHorrorMo @mcsweeneys @iftheresanyone @TalestoTerrify @RadonJournal
Niko Azhari Hidayat @drNikoAH
864 Followers 1K Following CardioThoracic & Vascular Specialist, Digital Health Lecturer FTMM UNAIR, Indonesia.
Nelasho @nelasho47723
65 Followers 103 Following
AccidentalAdvocate @AccidentalAdvo1
916 Followers 2K Following Mum to a family with #22q11 #VerbalDyspraxia #Autism RADLD ambassador Director Finding Charlie's Voice Learning as we go along. Tweets are my own
Caroline Joyce @carolinemjoyce
259 Followers 454 Following Principal Biochemist in CUH. Doctoral Researcher in UCC. Investigating GTD @PregnancyLossUCC #molarpregnancy #loveirishresearch
CLARITY-Collab for Lo.. @CLARITY_aorta
8 Followers 33 Following collaborative research study to better understand hereditary aortic and arterial disease in the young
CSFLeakMatters @CSFLeakMatters
417 Followers 823 Following There is dignity in a diagnosis. Once a research & clinical OD and nationwide speaker, now a decade completely flattened by spontaneous Spinal Fluid Leaks.
Rareminds @RaremindsUK
983 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Grace K @girl_turners
8 Followers 162 Following woman living with Turner Syndrome and Aortic Dilation . Charity fundraiser & volunteer. Tweeting a lot about genetics & Aortic Dissection to raise awareness.
Adriana Boschi Moreir.. @BoschiAdri
84 Followers 326 Following Psychologist at @UFSC | PhD candidate in Medical Sciences | Interested in functional / dissociative (psychogenic non-epileptic) seizures and other #FND 🧠📚🇧🇷
Victoria Hilton @vic_hilton
0 Followers 13 Following
Mags @SophieW54602694
6 Followers 151 Following
Carlota Fernandez Pre.. @CarlotaFPrendes
396 Followers 659 Following Vasc Surgeon @LMU_Uniklinikum, #FEBVS, Assoc Editor @EJVES_ESVS, PhD @UppsalaC and @LMU_Uniklinikum. #aorta #aortaed #dissections #carotid #CLI #MedEd
Loeys-Dietz Canada @LDSFCanada
108 Followers 97 Following Encouraging education and research, and supporting the LDS community. Favoriser l’éducation et la recherche, et fournir un soutien à la communauté LDS.
Shaine Morris MD MPH @ShaineMorris1
1K Followers 569 Following Pediatric and Fetal Cardiologist, Epidemiologist, Cardiovascular Genetics, Cardiovascular Imaging, Aortic and arterial nerd, Advocate (She/Her)
R. Anne Teaze 🥄�.. @teaze_r
1K Followers 2K Following Financial markets trader/investor 📈 #vaccineinjured w/ #POTS which onset after my Pfizer Covid vaccine #NEISvoid🦓🥄
FalalalaLan @Lanthedan
66 Followers 121 Following Pro wrestling enjoyer, Wii U apologist, bad pun enthusiast. He/him. Guy with Marfan Syndrome.
Santamaria Lab @SantamariaUK
376 Followers 567 Following BHF Intermediate Basic Science Research Fellow & lecturer working on proteases & proteoglycans, amateur runner, book-addicted. Views are my own.
Bernadette Nolan @Bernade47405566
164 Followers 444 Following Caring for my husband. Hidden disabilities and brain injury advocate. Aortic Dissection awareness, fund Neuro rehabilitation now, don't get sick in Ireland.
Gabriel Lopez-Peña C.. @GabrielGLP
221 Followers 3K Following Vascular Surgeon trained at @incmnszmx 🇲🇽 - Vascular Surgery Fellow at St Mary's H 🇬🇧- opinions are my own
Paul Jeynes @paulwhoiswas
20 Followers 47 Following Irish | cultural anglophile | ♥️guitar | ♥️90s indie/britpop, 70s prog | Carer | Son of Nuclear Test Veteran | #marfan | #LUFC 🇪🇺🇮🇪🇬🇧🇸🇪🇺🇦🌹
nuala mcmanus @nualamcmanus1
537 Followers 281 Following
FUNDACIÓN FIVE WORDS.. @5palabras5
3K Followers 3K Following Intentamos hacer un mundo más digno a través del ARTE. Presidenta @MarMarOlayo Fundadora de Cinco Palabras 🖐🏽
Marfan Sindrome @MarfanSindrome1
5 Followers 23 Following Red de apoyo para afectados en Panamá mamá empoderada
Richard Dake @dakerichard
26 Followers 337 Following
Nerdy Zebra @nerdymedzebra
1K Followers 1K Following #ActuallyAutistic #ADHD nerd with #EDS/#HSD, #Dysautonomia, #MCAS, etc. | Pls link me related papers to read. 🙏 | She/her. | BLM | + @ExecDysfunction
Hassan Koroma @KoromaH
873 Followers 3K Following social worker/community organizer, social justice fighter. Founder and National Coordinator of Social Workers Sierra Leone 🇸🇱
Annette Magallanes @AnnetteMagalla3
40 Followers 221 Following
Marfan Mama @MamaMarfan
1 Followers 9 Following
Francesca Murphy @Francesca201911
2 Followers 598 Following
Marfan Trust @MarfanTrust
2K Followers 958 Following Founded in 1988, the Marfan Trust supports patients & funds research into the cause & prevention of Marfan syndrome, a connective tissue disorder.
SIMA Asociación @SIMA_Asociacion
538 Followers 465 Following #SIMA es una Asociación Nacional sin ánimo de lucro, formada por los afectados por el #SíndromedeMarfan y sus familiares. Más de 260 familias
TheMarfanFoundation @MarfanFdn
5K Followers 2K Following The Marfan Foundation works to save lives and improve the quality of life of individuals with Marfan syndrome and other genetic aortic conditions.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Aortic Dissection Cha.. @AorticDissectCT
7K Followers 2K Following Saving lives by improving the diagnosis of #aorticdissection, bringing treatment consistency across the whole patient pathway #AortaEd, policy change & research
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Loeys-Dietz Syndrome @LDSFoundation
922 Followers 81 Following Encouraging education, fostering research, and providing support for the Loeys-Dietz community.
Gareth Owens @Icarus1054
1K Followers 1K Following #AorticDissection survivor thx to @NHSBartsHealth. Dacron inside by @TerumoAortic. #PatientLeader, Chair @AorticDissectUK & the global @THINK__AORTA campaign.
Aortic Dissection Awa.. @AorticDissectUK
3K Followers 2K Following The national patient charity for #AorticDissection. Raising awareness, providing support, improving care, enabling research. Registered charity number: 1198617
VASCERN @vascern
2K Followers 636 Following Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
Rare Disease Clinical.. @rare_trial
736 Followers 1K Following HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core
Bernadette Nolan @Bernade47405566
164 Followers 444 Following Caring for my husband. Hidden disabilities and brain injury advocate. Aortic Dissection awareness, fund Neuro rehabilitation now, don't get sick in Ireland.
Bohemian Football Clu.. @bfcdublin
51K Followers 3K Following https://t.co/Oo8hwvKB5o 100% fan-owned since 1890. Find us at Dalymount Park, the Home of Irish Football. Proud main partner @DesKellyIE.
League of Ireland @LeagueofIreland
65K Followers 925 Following Official account of the League of Ireland - Home to the SSE Airtricity Men's and Women's Premier Divisions, and the SSE Airtricity Men's First Division
Gary Lineker @GaryLineker
8.9M Followers 1K Following Once kicked a ball about. Now talk about kicking a ball about. The Rest Is Football @restisfootball @Goalhangerpods ..Instagram . Retweets are not endorsements
Carlota Fernandez Pre.. @CarlotaFPrendes
396 Followers 659 Following Vasc Surgeon @LMU_Uniklinikum, #FEBVS, Assoc Editor @EJVES_ESVS, PhD @UppsalaC and @LMU_Uniklinikum. #aorta #aortaed #dissections #carotid #CLI #MedEd
Dr Birgit Kehrer @changekitchen
4K Followers 4K Following Fresh tasty #catering 4 business lunches, birthdays #conferences, #weddings #funerals & #locationcatering. #socent. #Adoptive Mum. Views my own 07828825850
Shaine Morris MD MPH @ShaineMorris1
1K Followers 569 Following Pediatric and Fetal Cardiologist, Epidemiologist, Cardiovascular Genetics, Cardiovascular Imaging, Aortic and arterial nerd, Advocate (She/Her)
Openapp - an IQVIA bu.. @OpenappIreland
427 Followers 309 Following International software company providing healthcare IT solutions to Health Executives, Patient Organisations & Pharmaceuticals. #evidenceforhealthcare
Vladimir Medaković @vladama
1K Followers 2K Following demokrata, dipl. ing. zaštite životne sredine, otac jedne D, suprug jedne M. #lfc #ynwa #MarfanSy ponosan potomak svojih predaka
nuala mcmanus @nualamcmanus1
537 Followers 281 Following
Anton Savage @AntonSavageShow
46K Followers 2K Following Newstalk 9-11am Saturdays, 10-12 Sundays. By virtue of this site becoming a cesspit, tweets from anonymous accounts will be blocked.
FullSteamAhead Clare @STEAM_Clare
143 Followers 55 Following A page for sharing all things STEAM in Co. Clare. Find the latest editions of our Full STEAM Ahead magazine, as well as inspiration for lesson ideas.
SWAN Ireland @IrelandSwan
297 Followers 332 Following SWAN Ireland is a dedicated support group for people living with 'a syndrome without a name' and their families. [email protected]
SumAll @SumAll
12K Followers 1K Following We 💙 small business ☕👕🍛💈🍦 Follow for marketing and sales tips ✨📸✨ Visit our site to see how we work with your POS to automate social media marketing!
Conectiva.lat @conectiva_lat
155 Followers 155 Following La red de los Trastornos Hereditarios del Tejido Conectivo de Latinoamérica. Marfan - Elher Danlos - Loeys Dietz
Spina Bifida & Hydroc.. @SBH_PAG
1K Followers 5K Following Parent-led voluntary group advocating for children living with Spina bifida and/or Hydrocephalus in Ireland Co-leads @mandacoughlan @UnaKeightley
The Scoliosis Advocac.. @scolionetwork
3K Followers 3K Following Founded by @chelleylong @clarcahill - Access to quality & timely #scoliosis assessments & treatments is a children’s rights issue.
CHIatConnolly @CHIatConnolly
938 Followers 198 Following Children's Health Ireland at Connolly official account. Our vision: Healthier children and young people throughout Ireland.
CHIatTallaght @CHIatTallaght
2K Followers 991 Following Children's Health Ireland at Tallaght official account. Our vision: Healthier children and young people throughout Ireland. Here 9-5.
CHI at Crumlin @CHIatCrumlin
4K Followers 316 Following Children's Health Ireland at Crumlin official account. This account has now moved to one Children's Health Ireland account: @CHI_Ireland
Marfan Maybe @MarfanMaybe
2 Followers 17 Following Trying to piece together a lifetime of possible Marfan Syndrome. Growth-reductive therapy with high dose sex steroids as a child, bicuspid aortic valve.
Paul Grainge FSyI @Skip764
576 Followers 1K Following Raised in Gt Ayton N Yorks gave me the love for all things outdoors #CardiacAthlete LiRF 30yrs+ Army Reserve (RMP & RE) & policing Teesport - Exemplo Ducemus
Adam King Adventures @AdamKingIRL
22K Followers 824 Following Adam King,TV star,creator #adamsvirtualhug ©️ | queries/collabs 📧 [email protected] |Insta: adamkingadventures | account managed by Dad ♥
Conor’s Clips @conorsclips
42K Followers 14K Following In memory of Conor, Darragh and Carla Mc Ginley. Supporting the Conor’s Clips You Tube channel, Snowman for Carla and the charity As Darragh Did (RCN 20206230)
Aortic Dissection Col.. @ADCollab
2K Followers 3K Following Funded by @PCORI to engage patients at risk for and with aortic dissection, and stakeholders in aortic research prioritization. #aorticdissection #aortaEd
Happy girl #MagdalenB.. @WhatNewsScience
2K Followers 5K Following created #MyalgicE # tag to get rid of #MEcfs cause chronic fatigue is a symptom of 1000's of illnesses & leads to misdiagnosis re dx #EDS #MARFANS #poTS #mcas
Róisín Hutchinson @RoisinHutch
375 Followers 783 Following Superintendent in Radiotherapy NHS 💙 Reading, fashion & photography #therapeuticradiographer Supporter of @MarfanTrust Views my own
MaviSeattle @maviseattle
2K Followers 5K Following
canalmarfan @canalmarfan
34 Followers 82 Following El portal web médico acerca del #síndrome de #marfan. Contenido escrito en español para toda la comunidad marfan; web médica acreditada (HonCode y + sellos).
MarfanPolska @MarfanPolska
52 Followers 66 Following Stowarzyszenie Marfan Polska. O genetycznych rzadkich chorobach tkanki łącznej. #ZespółMarfana #TętniakRośnieWCiszy
Aortic Dissection Bud.. @aortabuddiesuki
353 Followers 262 Following Over 1,000 Survivors and family members affected by #AorticDissection. We are the National Patient Support Group of @AorticDissectUK "Today is a Good DAY"
Eilish Jordan @EilishJordan
17 Followers 30 Following
Jane Glandfield @JaneGlandfield
10 Followers 84 Following
Dr Victoria McKay @VictoriaHMcKay
695 Followers 1K Following MBChB MBA. Shoe aficionado, foodie, bookworm 📖 📚 Evidence-based Yoga geek 🧘🏻♀️ 🤓 🙏🏻
THINK AORTA Global @THINK__AORTA
3K Followers 5K Following Official worldwide THINK AORTA campaign to improve the diagnosis and treatment of acute #AorticDissection, founded and led by @AorticDissectUK.
Marfan Syndrome @MarfanSYN
57 Followers 97 Following
den i asbl @marfan_den_i
68 Followers 53 Following L'asbl a pour vocation de faire connaître le syndrome de Marfan dans le but d'en accélérer le diagnostic et d'en améliorer la prise en charge au Luxembourg
Tallaght Ambulance @TallaghtAmbo
3K Followers 1K Following TALLAGHT AMBULANCE BASE: Providing excellence in pre-hospital emergency care to the locality and the people of Dublin, Wicklow,Kildare & Meath(not offical NAS)
ST🌑 @st4lky
672 Followers 1K Following
Brian Mc Dermott @ChefBrianMcD
10K Followers 7K Following Chef from #Donegal Author of 3 Cookery Books another on the way. Media Contributor #BBC #RTE @RTEToday Show. Resident chef on @TodaywithClaire @BBCRadioFoyle
Danny Boy @Care2much18
29K Followers 1K Following Favourite films of 2022: 1. Aftersun 2. An Cailín Ciúin / The Quiet Girl 3. The Worst Person in the World 4. Decision to Leave 5. EEAAODid you know Ireland currently screens newborn babies for fewer diseases than 75% of other European countries? Support our 2024 Get Rare Aware campaign and take action now on getrareaware.ie #GetRareAware
Let's maximize number of conditions screened in heel prick test. Systems-wide approach will ensure we give those babies with #RareDisease opportunity to live their best lives with early intervention & action. #GetRareAware @itsthatgirlsuzi @CcoHse @BernardGloster @CMOIreland
"PKU is rare but what isn’t rare is the fact that every baby has a heel prick test with their parents consent at the very start of their life." Mam Aoife shares her story about her sons rare disease PKU & the importance of heel prick tests. Read➡️shorturl.at/EJKQ1
@DenisNaughten @RareDiseasesIE @rareireland Perhaps you should ask @SimonHarrisTD to intervene considering you’re giving him your vote of confidence 🫠
I know @SimonHarrisTD for well over 20 years. I have worked with him in the past on flooding issues, health issues & science issues. And hope to continue to do so. I look forward to working with him over the next 12 months as Taoiseach & I’ll be voting for him next Tuesday
Breaking: there is no room for national genetic testing lab in new Children's Hospital - here is why this lab is so important youtu.be/iOFELMeTLAU?fe… @RareDiseasesIE @rareireland
A stark Friday fact created in response to an alarming article in the Guardian - bit.ly/43NhS6J - on the devastating consequences of failing to give dental patients w/ heart conditions antibiotic cover. Order your IE alert card today. bit.ly/3VMy2LO #marfan
Last month, we had the privilege of attending the phenomenal #IAmNumber17 campaign launch. Inspiring Changemaker stories and a sense of community empowerment were just some of the highlights! Let's keep raising awareness and support for those 1 in 17 living with #RareDisease
Dr. Bowen helps us better understand the anatomy of the aorta and aortic aneurysms. Check out his video. buff.ly/3wYvqQm #Marfan #MarfanSyndrome
30 years of annual #Echocardiography told me my #Aorta was normal. Within 30 mins of arriving at hospital by ambulance with sudden onset, severe chest pain, a CT Aorta diagnosed a 6cm #Aneurysm & an acute Type B #AorticDissection. This undoubtedly saved my life. @RCRadiologists
Our key message in Patient Safety Awareness Week #PSAW2024 @ptsafetylearn @RCollEM @RCEMLearning @RCRadiologists @SCTSUK @VSGBI @ICS_updates @heartresearchuk @theHSSIB @EMSAS_RCEM @ACEPNow @STS_CTsurgery @VascularSVS @ADCollab @ThinkAortaUS @AorticDissectUK @TheIHI #PatientSafety
@RareDiseasesIE & @NI_RDP invite you to join our annual North-South #RareDiseaseDay conference live online on Thurs, 29 Feb. The conference is running 9.45am to 5pm - join for as much or as little as you can. Registration required - us02web.zoom.us/webinar/regist…
300 million lives, 300 million stories that aren't being told. Today, on #RareDiseaseDay, we stand united with patients, families, & #healthcare professionals around the world to shine a light on #rarediseases. #shareyourcolours #LightUpForRare #Awareness @rarediseaseday
@avrilbdaly chairing our first session of our #RareDiseaseDay conference. @eurordis @Retina_Int
🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours
#RareDiseaseDay has arrived on a chilly but bright morning @farmleighOPW, Phoenix Park, Dublin. Thank you for opening this beautiful venue for us today, on Rare Disease Day in a Leap Year. Last Leap Year we were with @PresidentIRL in Áras an Uachtaráin, another wonderful venue
Hannah Goddard, quoted by @BBCNews: "We want to stress the importance of educating people, particularly in the medical field, about #LoeysDietz Syndrome and #AorticDissection." She urged people to visit the thinkaorta.net education campaign site. bbc.co.uk/news/uk-englan…
@RareDiseasesIE @rareireland Dáil debate next week: x.com/DenisNaughten/…
Government to hold Dáil debate on #raredisease next week. On foot of my request the Government has agreed to facilitate a debate on rare disease and Ireland's rare disease strategy next week as part of #rarediseaseDay2024
Practising his cooking skills in preparation for uni, Micah was 19 with the world at his feet. It was July 2020 & the second day of his summer holidays. But Micah didn’t end up going to uni. Instead he died of an #aorticdissection. Please RT & read on: tinyurl.com/2rbre87f
Equity is fair access to #diagnosis, treatment, and care for the 300+ million people living with a #raredisease. It is a right, not a privilege. On #rarediseaseDay, let's advocate to making equity a reality for all. Find out how: bit.ly/48MOVZL #LightUpForRare
Super day out for the rare community - thank you @rareireland for all you do to support people living with rare diseases and their families. 👏👏👏
Great day in Portmarnock today for our #RDD cold water dip. Thanks @rachsail, @VirginMediaNews @NfIreland and @RorysStories for all the support #StrongerTogether #RDD2024
Marfan Syndrome has a lot of similar symptoms to Loeys-Dietz Syndrome. As such we are more than happy to provide help, advice & support to anyone with LDS. Don't forget to LIKE & Share to post - you'd never know who you’re helping! @LDSFoundation @LDSFCanada @RareDiseasesIE
Our stylish sticker alerts people to the signs and symptoms of Marfan Syndrome. Make Marfan Matter and Make the Message Stick! Order yours today! tinyurl.com/epv2nm2t
Trends for United States
You might like
