Rare Diseases Ireland
@rarediseasesie
Equitable access to healthcare and opportunity for all!
RDI - advocating for equitable access for the 300,000 people in Ireland living with rare diseases.
ID: 466461711
http://rdi.ie/ 17-01-2012 12:42:06
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Slow rate of #NSAC recommendation & #HSE adoption very disappointing. 3 NSAC recommendations in 5 yrs! 30 more #RDs await NSAC assessment. Babies can't wait 50 yrs - too many becoming seriously ill every year. System is NOT working. Shame on us! Jennifer Carroll MacNeill TD Chief Medical Officer
Daniel Mikula highlights HealthResearchBoard funded Rare Diseases Catalysts Consortium (RDCat) and activities Rare Disease Clinical Trial Network, Ireland conference Delighted to work with Rare Diseases Ireland EURORDIS-Rare Diseases Europe focused on Outcome and experience measures in Rare Diseases
There's never enough #RareDisease research being conducted but at least we see that progress is being made in Ireland at today's Rare Disease Clinical Trial Network, Ireland conference. 👏👏👏 RESEARCH = HOPE Inspirational talks! Thank you
Great team collaboration between Rare Diseases Ireland UCD School of Nursing, Midwifery & Health Systems EURORDIS-Rare Diseases Europe with a focus to co-develop PREMs for caregivers and people living with rare diseases HealthResearchBoard funded research consortium Rare Disease Clinical Trial Network, Ireland University College Dublin
ERDERA is seeking Irish experts to join a pool of specialists to participate in ERDERA #raredisease research activities, panels & networking opportunities. Don’t miss this opportunity to connect, contribute, and grow with a dynamic international community. forms.office.com/pages/response…
Never ending delays but know HSE team are getting technologies up & running Look forward to more tests being quickly reviewed & approved by #NSAC & implemented by HSE Ireland to bring newborn screening up to at min EU average levels Jennifer Carroll MacNeill TD Ellen Crushell Bernard Gloster
Our friends in UCD School of Nursing, Midwifery & Health Systems are seeking rare disease parents - 👩👧 Raising a child with a #raredisease? Your experiences matter! Help researchers understand the financial & social impact of rare diseases on families in Ireland via a 30 minute survey! tinyurl.com/bdhwd2az
Delighted to support SMA Ireland MuscularDystrophyIRE call for equitable access to treatment. To think that 20 adults have been denied treatment because of their age. Treatment that will limit disease progression & enhance quality of life. #BrokenReimbursementSystem Jennifer Carroll MacNeill TD
Minister for Health Jennifer Carroll MacNeill TD has launched the new National Rare Disease Strategy. This is a big step forward & serves as a roadmap to drive change on the ground. Big congrats & thanks to all involved, especially people living with rare diseases and their families. 👏👏👏
What's the new National Rare Disease Strategy all about? Take a look at the "Easy Read" guide prepared by Department of Health with the input of patient representatives. Thanks! 👏👏👏 bit.ly/47Rqayu RARE Ireland IPPOSI 22Q11 Ireland Inclusion Ireland Neurological Alliance of Ireland EURORDIS-Rare Diseases Europe
Care is research, research is care! There is hope for the future when research is embedded as standard across rare disease care, as exemplified by this extraordinary example of care Rare Disease Clinical Trial Network, Ireland HealthResearchBoard Health Research Charities Ireland - HRCI EURORDIS-Rare Diseases Europe ERDERA Jennifer Carroll MacNeill TD HSE Ireland HSE Research & Development
Are you living with or caring for someone with a #RareDisease? Are you a #RareDisease advocate? Please take 5 minutes & complete a short survey to help the HSE Ireland #NationalRareDiseasesOffice to learn about your awareness of #EuropeanReferenceNetworks bit.ly/4mmzoWZ
Please complete this timely survey from @EURORDIS Rare Barometer. Irish data will provide us with insights on starting point as Dept of Health Department of Health roll out implementation of the new National Rare Disease Strategy over coming months and years. #DataDrivesAction