#GetRareAware Campaign launch by Rare Diseases Ireland at The Dáil Dystonia Ireland represented by Steve Petherbridge
Photos include: Minister Anne Rabbitte TD TD Fergus O'Dowd Fergus O'Dowd TD Pádraig O'Sullivan TD Vicky McGrath CEO Rare Diseases Ireland
#Dystonia
Irish Times Health+
Our clinical leads Prof Crowley Rachel Crowley & Prof McCarthy proudly supporting the Rare Diseases Ireland #GetRareAware campaign at the Oireachtas Houses of the Oireachtas - Tithe an Oireachtais today.
Time for Stephen Donnelly, #TDs & #Senators
to take action to improve genetic services in Ireland!
Raising awareness throughout the month of February for the 300K+ families living with rare disease #rdd2024 #StrongerTogether #GetRareAware #ItsNotRareToBeRare
Nothing can dampen our spirits when it comes to keeping the #GetRareAware conversation going!
Let's continue to raise awareness of rare disease diagnostic journeys, and fight for better genetic services in Ireland!🧬
Stephen Donnelly Leo Varadkar #RareDiseases #EndTheWait
Dystonia Ireland are pleased to be part of the #GetRareAware campaign launched by Rare Diseases Ireland The photoshoot for the launch is TODAY Wed 17th Apr at 11.30 outside The Dáil
See getrareaware.ie and rdi.ie
#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…
We are so far behind in Ireland when it comes to genetic testing resources 🧬 Rare Diseases Ireland so much expertise in this room #getrareaware well done to cross party committee on rare diseases Pádraig O'Sullivan TD Fianna Fáil
Delighted to join Rare Diseases Ireland at the launch of the #Getrareaware campaign launch at Leinster House 🙌 Dystonia 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
Join the #GetRareAware campaign by Rare Diseases Ireland, urging politicians to expand newborn screening nationwide! Ireland screens for fewer diseases than 75% of Europe.
Photo: Fergal Griffin, Gillian Minnock, Aoife O’Donovan.
Join us: getrareaware.ie Rare Diseases Ireland
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
We're delighted to be part of the #GetRareAware campaign launched this week by Rare Diseases Ireland
An interesting day to be at Leinster House. 👀 Alice Public Relations client Rare Diseases Ireland are briefing politicians on #GetRareAware campaign in the AV room- an important campaign highlighting long genetic diagnosis periods - 2 years - and a severe lack of staff, 1/2 the no. we need.
The importance of “finding your tribe” was named by Vicky McGrath CEO of Rare Diseases Ireland. This was the inspiration for SWAN Ireland. To connect children & families. Amazing to stand together as part of the rare disease community for the #GetRareAware campaign.
Thank you Vicky McGrath CEO Rare Diseases Ireland for the final event of the #GetRareAware campaign today. A union of patient advocacy groups & representatives to speak about obstacles on the diagnostic odyssey & practical ways to reduce wait times for genetic services in Ireland.
Raising awareness throughout the month of February for the 300K+ families living with rare diseases in Ireland #RDD2024 #GetRareAware #strongertogether #ItsNotRareToBeRare #RareDiseaseCommunity #rarediseaseawareness
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
