Rare Disease Research in Ireland
Find and connect with those involved in or passionate about rare disease research in Ireland. Join in, suggest additions, and help grow our community!
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@rarediseasectn.bsky.social
@rareireland.bsky.social
@evidsynirl.bsky.social
Building #EvidenceSynthesis capacity Based at University of Galway Host Cochrane Ireland Funded by Health Research Board & #HSCRandD Newsletter http://eepurl.com/dGKBmD www.evidencesynthesisireland.ie
@ilfa-ireland.bsky.social
Supporting patients and the lung fibrosis community with education, advocacy, research, and direct services.
@debraireland.bsky.social
We are the butterfly skin charity. Uniting for change for everyone living with epidermolysis bullosa (EB). Registered charity (CHY 8703/RCN 20021726)
@sheehangilroy.bsky.social
Lecturer Researcher Advocate #PKU #LowProtein #BrainHealth #RareDisease "Ní neart go cur le chéile" The views and opinions expressed here are solely my own
@melissa-kinch.bsky.social
PhD candidate UCD | Child, Adolescent & Family Research | Patient Voice & Engaged Research | Rare Disease Research | Methods Enthusiast | All views are my own
@ucdscience.bsky.social
University College Dublin | College of Science | gary.dunne@ucd.ie | orla.donoghue@ucd.ie | www.ucd.ie/science
@researchireland.bsky.social
Ireland’s new competitive research and innovation funding agency
@rarediseasesint.bsky.social
RDI is the global alliance for persons living with a rare disease, across all countries and all rare conditions.
@shforde.bsky.social
Rare disease/immunology researcher 🫁 Research Data and Regulatory Affairs Officer @rarediseasectn.bsky.social 📈 https://www.linkedin.com/in/sarah-forde-9b1877248 Views are my own
@nibhradaigh.bsky.social
Interested in all things healthcare science-y, slightly obsessed with mitochondria. Digital Health Innovation Lead @FutureNeuro_ie. All views my own.
@avrilbdaly.bsky.social
Health equality advocate. Animals, Art, Anthropology. Living in Dublin, working at Retina International. Views my own.
@irishmecfsassoc.bsky.social
Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association NB: Posts should not be considered advice Registered Charity Number 20100254 CHY 22039 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME. Some #LongCovid items also
@raising-rareness.bsky.social
Raising awareness of rare diseases & conditions #2q24.2 Advocating for my daughter & Rare Community 💗 Mum of 3 #AAC #AugmentativeAndAlternativeCommunication MA Archaeology UCC Opinions my own 🇮🇪
@irishthoracicsoc.bsky.social
Irish Thoracic Society (ITS) is dedicated to championing excellence in the prevention, diagnosis, & clinical care of respiratory disease. Registered CN 20065294
@curamdevices.bsky.social
CÚRAM is a national research centre, hosted by University of Galway, specialising in the creation and translation of clinic-ready and patient focused medical devices that will improve the quality of life for patients living with chronic diseases.
@fightblindness.bsky.social
We are the driving force in the global development of treatments and cures for blinding diseases.
@sujas.bsky.social
Associate Dean of Global Engagement| Associate Professor #UCDSNMHS #UCD # Dublin #Ireland #Researcher #Paediatric Nursing #Rare Diseases #PCOM #PREM #Child Health #Family Health
@epilepsyireland.bsky.social
Working to achieve a society where no person’s life is limited by epilepsy. www.epilepsy.ie
@usherireland.org
We are a volunteer-run charity supporting individuals & families living with Usher syndrome, a progressive condition causing hearing & sight loss. We also advocate for awareness, & fund research. RCN:20206288 - www.usherireland.org - Ireland - Rare Disease
@lsireland.bsky.social
Central point for Lynch syndrome related issues in Ireland. An inherited predisposition to certain types of cancer e.g. colon and endometrial.
@sorchainenil.bsky.social
Geneticist & cyclist & lots more! Beagáinín gaelige 🇮🇪 People.ucd.ie/sally.lynch
@avrilkennan.bsky.social
CEO, Health Research Charities Ireland @hrci.bsky.social (views own). PhD in genetics. Ambitious for a better world through collaboration & inclusion. She/Her 🤹♀️ PPI | research impact | health data | evidence-based policy | genomics | rare diseases...
@sonialenehan.bsky.social
Public and Patient Involvement (PPI) coordinator at the Irish Network for Children's Clinical Trials (In4kids). Education and Public Engagement (EPE) manager on the ELEVATE project at the INFANT Research Centre at UCC.
@robertoconnor.bsky.social
Scientist, health researcher, shutterbug📸 and lover of all things outdoors above & below the water. Board Chair www.NCRI.ie & www.arccancersupport.ie Volunteer www.civildefence.ie
@hrci.bsky.social
Health Research Charities Ireland (HRCI) is the national umbrella organisation of over 45 charities engaged in health, medical and social care research, collectively representing over 2 million people in Ireland. www.hrci.ie
@cassandradinius.bsky.social
Passionate about promoting science accessibility for all. 🤓🧠 Collaborates with patient and community groups on health and ageing research. From rainy Portland, now living in rainy Dublin.
@rarediseasectn.bsky.social
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.