Top Tweets for #plwrd
Here is the link to support and participate in the walk and run
https://t.co/r0zXfxO5ke
Get a shirt👕 and medal🥇
You can also sign up to be a vendor using our website. https://t.co/ZUTgfJ2iVH
heck our website. https://t.co/Z2uFQm2AVj.
Call/whatsapp
+254720560328.
#PLWRD
The adoption of a global resolution on #RareDiseases is a major step forward for the 300M+ people affected worldwide. The proposed #GAPRD offers a chance to improve diagnosis, care & innovation. Our industry remains committed to help #PLWRD➡️
https://t.co/hN3X6IL4AL
Cold water dip in Spanish point, Co. Clare yesterday in aid of Rare Ireland and in support of all #PLWRD thank you to all who braved the cold to support us
On @RareDiseaseDay, we stand with Rare Disease International & call for a WHA Resolution on Rare Diseases. Let's educate, dispel stigma & ensure inclusion! 🫱🏼🫲🏾
#RareDisease #GPP #PsoriaticDisease #PLWRD #Resolution4Rare
Donal O'Shea, Person Living with a Rare Disease https://t.co/bTAFiMHiUg via @YouTube Raising awareness of rare diseases #RareDiseaseDay #PLWRD @RareDiseasesIE @RareDiseasesIE @eurordis @sujas15 @a_j_mcknight @Melissa_Kinch_
Delighted to be @HealthAwardsIrl this evening with colleagues from @HSELive National Rare Diseases Office - hopefully to pick up award for Research Paper of the Year 🤞🤞 on care pathways that #PLWRD were so instrumental in developing. Partnership at work!
Today is CACNA1C Awareness Day, 1 Oct. Take a look at the awareness video and faces of the community @tsa_charity #PLWRD #Rare #Awareness
A People-centered #UHC means putting Persons Living with Rare Diseases at the core of care. A #WHA Resolution for a Global Action Plan on Rare Diseases can drive an integrated approach and the empowerment of PLWRD and their families. #Resolution4Rare #PLWRD #HealthforAll #XX24
FraXI joins RDI in urging a World Health Assembly Resolution for a Global Action Plan on Rare Diseases that would create sustainable national programs for better access to diagnosis, treatment, and support.
#UHC #HealthForAll #PLWRD #Resolution4Rare
Rare Ireland annual conference. Speakers include Anne Lawlor from @22Q11_Ireland and care Co ordinator Wesley Mulchay who will highlight the success of the 22q clinic and the need for co ordination for #PLWRD register here for tickets https://t.co/OSB8toUtuN
Calling on the #RareCommunity please complete if you have a few mins. What is your experience of having a rare condition or caring for a #PLWRD in 🇮🇪
What do you consider the priorities for the new National Rare Disease Strategy.. #HaveYourSay #ShareYourExperience
IMPORTANT
Public consultation to inform development of National Rare Disease Strategy launched by @DonnellyStephen.
Please share your thoughts.
Access consultation
https://t.co/tybkF9DVvT
For more info
https://t.co/aCbS4chUcO
Questions to [email protected]
Really engaging panel discussion on the importance of #Partnership #PPI in rare research
For #PLWRD & their families it is imperative that their voice is at the very core of research
@22Q11_Ireland @rare_trial Cassie @VasseghiMary Triona Seery & Daniel Mikula
It’s time to act now! As the All Ireland interdisciplinary Rare Disease research community we committed to enhancing health outcomes and quality of life for the 410000 people living with a rare disease on the Island of Ireland and we support @EJPRareDiseases Action Plan #PLWRD
Join the #RareDisease community in urging the European Commission to prioritize health and create a comprehensive Action Plan! Sign the petition by June 3rd and share to amplify our voices.
https://t.co/ZYmHniAOHm
I'm excited to join experts by experience at the RAiN
Symposium @ittralee RAiN is committed to advancing and promoting #PPIE #EDIfocused rare disease research across Ireland. #RareDiseases #RAiN #Research #Healthcare #Needfocused #solutionbased #PLWRD @a_j_mcknight @UCD_Research
We cordially invite you to the RAiN Symposium on June 10, 2024, at @ittralee. Discover the incredible work supporting those living with rare diseases in the South of Ireland. Registration is required
🔗 https://t.co/aIMVjdrLWb
#RareDiseases #RAiN #MTUTralee #Healthcare
Live now! Revolutionising funding strategies for breakthrough therapies in rarer diseases @eurordis #ECRD2024 It is so crucial to address the challenges not only the #rarediseases clinical research but also with solution-focused interventions to be co-designed with #PLWRD
"Exciting update! Assoc. Prof. Somanadhan, co-lead of RAIN! presented report to the @IslandShared unit highlights the pivotal role of #RAIN outputs in driving Ireland's interdisciplinary research in #RareDiseases @IrishResearch @QUBelfast @UCD_Research #CRAG #PLWRD #ECR
Today on #InternationalWomensDay ,let's spotlight women and #RareDiseases. Women face gender inequality, greater stigma as #PLWRD, & heavier caregiving responsibilities. Let's honour the strength of women affected by #RareDisease.💪💙
#CRDN #RareDiseaseAwareness #IWD2024
On International #RareDiseaseDay2024, @hrbireland proudly underscores its commitment to Rare Disease research. Honoured to be part of a number of funding initiatives to foster Ireland's active engagement in tackling rare diseases and improving outcomes for #PLWRD. @UCD_Research
It’s International #RareDiseaseDay 2024. The HRB has a comprehensive strategy to support Rare Disease Research in Ireland.
Read about our recent investments and activities aimed to deliver better quality care and treatment for people with rare diseases at: https://t.co/jVmkYsK2z3
Raquel Castro @eurordis highlights the needs for people living with #RareDisease at the North South joint rare disease event #Dublin #PLWRD mental health impact is 3 times higher than general population. @RAiNAllIreland @RareDiseasesIE @rareireland
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