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
11,1K Tweets
4,0K Followers
1,1K Following
Great news for researchers! Abstract submission extended until 02nd of May 🎙️ come and join us Queen's University Belfast 🎓 Prof AJ McKnight Are you studying #Genetics #Biomolecular #Diagnostic #Careneeds #Services CPCCONF2024 #RareDiseases RAiN Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland RARE Ireland
Excited to announce the next speakers for our upcoming #CareCoordination webinar, Dr. Rita Francisco and Dr. Jessie Dubief from EURORDIS-Rare Diseases Europe, who will be speaking about the Rare Barometer Programme and H-Care project for Rare Diseases.
Register here: ucd-ie.zoom.us/webinar/regist…… ✨🧬
Superb workshop of the #rare #disease Patient Forum at Department of Health today. Thank you Minister Anne Rabbitte TD for speaking openly about where implementation can happen for rare diseases in Ireland. #frontrow
EXCELLENT VISUAL that highlights how #PPI can be integrated into the research cycle by NIHR Research
Diagram outlining the research process and how patient and public involvement can be embedded in it NIHR Involvement Be Part of Research RAiN Rare Disease Clinical Trial Network, Ireland Rare Diseases Ireland
Join us at 12.30pm today for our online event for people living in HSE region Dublin and South East to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: ow.ly/YqkE50Rhj2e #GetRareAware
#GetRareAware Take Action on getrareaware.ie
Let's expand Newborn Bloodspot Screening services - more commonly called the 'heel prick test'. Screening provides early diagnosis & access to support and treatment. Listen back to our first webinar. youtube.com/watch?v=T0oH4v…
Did 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
'New ways of working' can transform services & provide children with timely access to care they need.
An example of healthcare service innovation putting patient at the centre that does not cost a fortune. MORE PLEASE!!!🙏
Bernard Gloster Dr Colm Henry, CCO HSE Ireland Department of Health Stephen Donnelly
Join us at 12.30pm today for our online event for people in HSE region Dublin and Midlands to support our call for urgent action to address the inadequate newborn heel prick test screening services provided in Ireland. Register at: tinyurl.com/ycxpt8uz #GetRareAware
Did you know Ireland currently screens newborn babies for fewer diseases than 75% of other European countries? Support our 2024 Get Rare Aware campaign by visiting getrareaware.ie #GetRareAware
#GetRareAware Calling people in Dublin west and south-west, Laois, Longford, Offaly, Kildare, West Wicklow and Westmeath! Join us for our first regional launch of our 2024 #GetRareAware campaign at 12.30pm on Thursday, 18th April by registering at: bit.ly/GRA-Dublin-Mid…
#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.
#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.
#GetRareAware
Do you or someone you know have experience of being diagnosed through the newborn heel prick test? Would you like to share your story? We'd love to hear from you - contact us on [email protected]
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…
