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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A wonderful short video for all rare parents in Ireland RARE Ireland & around the world EURORDIS-Rare Diseases Europe RDI. Simple message will help you to manage & bring a smile to your face. #YouAreNotAlone ❤️❤️❤️ Video refers to 22Q but we can all learn from and embrace the sentiment
The beautiful Iamnumber17.ie exhibition is on in the Orbsen building until the end of July. Did you know that 1 in 17 people will be affected by rare disease at some point in their life? Come and get to know the inspiring stories of the 17 change makers RARE Ireland
New study reveals sweet and brave stories from Irish children living with rare conditions sundayworld.com/lifestyle/real… Sunday World RAiN UCD School of Nursing, Midwifery & Health Systems RARE Ireland Rare Diseases Ireland
Productive meeting with EURORDIS-Rare Diseases Europe. I thanked them for their cooperation and strong support to build an 🇪🇺 #HealthUnion over the last few years with key legislstive initiatives. We will continue working closely in the next months to support patients living with rare diseases.
Many neurological conditions are also rare diseases. Please take the opportunity to complete this survey with Neurological Alliance of Ireland and partners across UK. Make your voice heard!
As preparations for the next 5-year legislative term begin, we once again ask Ursula von der Leyen and her future Commissioners to heed the call of #ActRare2024. They have an opportunity to play a pivotal role in shaping a more inclusive health union. How? 👇 go.eurordis.org/mzShKZ
🎨We're excited to share the FutureNeuro Centre "My Unique Brain" Art Competition with you! Open to all young people across Ireland. Learn more and enter today! …o-my-unique-brain-art-competition.com/my-unique-brai… #MyUniqueBrain #ArtCompetition #BrainHealth #
10 weeks to go! Speakers include rare disease patients, family members, advocates and professionals working on the field of rare diseases. Register now on eventcreate.com/e/rareireland2… or rareireland.ie Rare Diseases Ireland 22Q11 Ireland Dr Suja Somanadhan RAiN Joan Johnston
As part of implementing the EU Health Data Space, HIQA Department of Health HSE Ireland HealthResearchBoard are creating a Public/Patient Involvement Panel on “Collecting, using, sharing health information for better services, policy, research & innovation” Details here: bit.ly/3yq176B
Disappointing response HSE Ireland Children, Equality, Disability, Integration, Youth Department of Health Easy to say no regional disparity for PLWRD, when almost no services offered today. Time to rollout rare disease care pathways regionally to "test" this theory and show what will/won't work. Bernard Gloster Stephen Donnelly