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!*
ID: 710595074
http://www.marfan.ie 22-07-2012 12:08:10
1,1K Tweet
500 Followers
171 Following
Rare Disease Day
@rarediseaseday
29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
TheMarfanFoundation
@marfanfdn
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 Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Edwina Wrenn O'Connell
@msedwina
Irish Exomphalos / Omphalocele Warrior. I set up and run the only Irish Omphalocele / Exomphalos support group Mom of three 💙💜💙 linktr.ee/edwinawrenn
Alex
@acgalicia
#CasaAbiertaAlTiempo
El sótano de @nit@
@elsotanodeanita
La vida no se mide por el numero de veces que respiramos, sino por los lugares e instantes que nos quitan la respiracion
Stickman Communications ltd
@stickmancrips
Stickman Communications Ltd: Creating understanding of disability related needs and issues. Run by Hannah Ensor. Now also on spoutible.
Christina van der Kamp
@christinavandk
CSR 🙏🏻Sustainability 🌿 Music 🎶 Water 💧 Politics 💜 Opinions entirely my own - I think.
Loeys-Dietz Syndrome
@ldsfoundation
Encouraging education, fostering research, and providing support for the Loeys-Dietz community.
Victoria Hilton
@vic_hilton
confusedgreen
@confusedgreen
Trying my best. Social worker & therapist, doing stuff, learning stuff, and pondering stuff like: is ‘Anxiety the dizziness of freedom’ (Kierkergaurd) Sometimes
Sarah J Hatherill
@wellststudio
Business and marketing lecturer. Typographer and wordsmith. Loves a doodle.
Gareth Owens
@icarus1054
Welsh Physicist, Chartered IT Professional & Executive; also singer, genealogist, classic BMW enthusiast, #AorticDissection survivor & Patient Advocate
Séimí Ó Deóraidhín 🇮🇪
@jamiedorrian1
Innealtóir i Sláinte Phoiblí if you see me post an indirect assume its for you
Veronika Dvorakova
@pupistuff
Paediatric dermatologist
Gill Berry 💙
@fahyberry
Mum of 2 teens
Brandon
@brandy_bottle
I tweet things that sounded funnier in my head
Urban2RuralMigrant
@lammersmc
Constitutional Conservative. Brother Knight. 1 citizen = 1 ID = 1 vote.
catherina mc garry
@catherinamc
Marfan Trust
@marfantrust
Founded in 1988, the Marfan Trust supports patients & funds research into the cause & prevention of Marfan syndrome, a connective tissue disorder.
Caroline Joyce
@carolinemjoyce
Principal Biochemist in CUH. Doctoral Researcher in UCC. Investigating GTD @PregnancyLossUCC #molarpregnancy #loveirishresearch
Theresa Masek
@tmasek21
Rhona
@rmsavage4
Loeys-Dietz Canada
@ldsfcanada
Encouraging education and research, and supporting the LDS community. Favoriser l’éducation et la recherche, et fournir un soutien à la communauté LDS.
alistair pagnamenta
@alistairp2011
Human genetics researcher based at University of Exeter
Mags
@sophiew54602694
Carlota Fernandez Prendes
@carlotafprendes
Vasc Surgeon @UppsalaC #FEBVS, Assoc Editor @EJVES_ESVS, PhD @UppsalaC and @LMU_Uniklinikum. #aorta #aortaed #dissections #carotid #CLI #MedEd
Laurraliz1
@laurraliz1
Zebra🦓-swiftie✨-wildlife nerd🦔🐾 -Dublin N1🫶
Stabb
@stabb_one
Je ne tweete pas, je lis. Bibliothèque d'infos, de pensées empruntées aux autres.
R. Anne Teaze 🥄🦓 🕊️
@teaze_r
Financial markets trader/investor 📈 #vaccineinjured w/ #POTS which onset after my Pfizer Covid vaccine #NEISvoid🦓🥄
Rareminds
@raremindsuk
Specialised mental health and wellbeing services for the rare disease community. bit.ly/rarementalheal…
AccidentalAdvocate
@accidentaladvo1
Mum to a family with #22q11 #VerbalDyspraxia #Autism RADLD ambassador Director Finding Charlie's Voice Learning as we go along. Tweets are my own
Benjamin
@benncfc46
⚫️⚪️⚫️⚪️
Kathleen McMahon
@kathlee81578033
Natasha Vaney
@natashavaney
hailong zhang
@asprinhailong
Fergus McDonnell
@fergus13254
Cathy Jordan
@cathyjo98390036
Boring retired architect living the good life in rural Arkansas.
Rare Disease Clinical Trial Network, Ireland
@rare_trial
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.
E. Alejandro
@ealejandrozv
Adriana Boschi Moreira
@boschiadri
Psychologist at @UFSC | PhD in Medical Sciences | Interested in functional / dissociative (psychogenic non-epileptic) seizures and other #FND 🧠📚🇧🇷
Caroline J. Daye
@daye100k
HAPPY 😊
Grace K
@girl_turners
woman living with Turner Syndrome and Aortic Dilation . Charity fundraiser & volunteer. Tweeting a lot about genetics & Aortic Dissection to raise awareness.
jennifer lesh fleck
@jen_lesh_fleck
A robot-zombie spinning dark + weird fiction: jenniferleshfleck.com
CSFLeakMatters
@csfleakmatters
There is dignity in a diagnosis. Once a research & clinical OD and nationwide speaker, now a decade completely flattened by spontaneous Spinal Fluid Leaks.
Grenville Richard Skelton🏴🇨🇮
@ric843skelton
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
CLARITY-Collab for Long.Aortic Imag. In the Young
@clarity_aorta
collaborative research study to better understand hereditary aortic and arterial disease in the young
Nelasho
@nelasho47723
Adam
@iffabug
🇮🇪 🇬🇧 🇺🇸 🇮🇱 🇷🇸 BA, MA, UCD . MPhil, Rice Univ, Texas. 🏀 Basketball . No Far Left. Opinions Personal. Irish and Serbian. Read/Travel.
It’s not just anxiety
@notjustanxiety
Mum of 4, interested in #EDS #HSD symptomatic #hypermobility and #neurodivergence and symptom #disbelief
みかん
@mikanl_n
ロイス・ディーツ症候群 / 指定難病/ 腹部大動脈瘤 / 大動脈弁閉鎖不全症 ★体験談はブログへ★
Bomma
@bomma1068912
Cynthia
@cyndaniele_
EDS Leader & Advocate-Fostering Mindful Wellness & Sharing my Journey to Strengthen Yours Through Creative Expression
Aortic Dissection Awareness UK & Ireland
@aorticdissectuk
The national patient charity for #AorticDissection. Raising awareness, providing support, improving care, enabling research. Registered charity number: 1198617
Niko Azhari Hidayat
@drnikoah
CardioThoracic & Vascular Specialist, Digital Health Lecturer FTMM UNAIR, Indonesia.
SIMA Asociación
@sima_asociacion
#SIMA es una Asociación Nacional sin ánimo de lucro, formada por los afectados por el #SíndromedeMarfan y sus familiares. Más de 260 familias
VASCERN
@vascern
Gathering the best expertise in Europe to provide accessible cross-border healthcare to patients with rare vascular diseases #ERNeu #RareDiseases
RARE Ireland
@rareireland
We are a parent led charity organisation founded since 2017 providing support for families of children with rare conditions in Ireland-RCN 20206340 #rareireland
José F. Rodríguez Palomares
@jrodripalomares
MD, PhD, FESC, FEACVI, FSCMR. Associate Professor. Head of Cardiac Imaging Unit, Aortic diseases and Inherited cardiomyopathies (GUARD-HEART ERN and VASC-ERN)
Dr Anjali Agarwal
@dranjaliphysio2
Health care Professional, consultant Physiotherapist. Lifestyle consultant. Advocacy Co Director Long covid Physio, treats #EDS #Hypermobile #POTS