Top Tweets for #IndividuallyRareCollectivelyCommon
I โค๏ธ Someone Rare
๐กDid you know that rare conditions are not really rareโฆ 1 in 17 people in Ireland are living with a rare condition.
#RareDiseaseDay2025 #IndividuallyRareCollectivelyCommon #RareCommunity
Attending the 2024 European Conference on Rare Diseases & Orphan Products online ๐
#ECRD2024 #ActRare #RareCommunity #CareForRare #IndividuallyRareCollectivelyCommon #30MillionReasons
@eurordis @ERNIthaca
Amazing summer internship opportunity in #RareDiseaseResearch ๐
What do we wantโฆโฆ. More research into #IndividuallyRareCollectivelyCommon rare conditions
#RareCommunity #SupportingResearch
Can't wait to visit this exhibition in the public park of St.Stephens Green. So proud of my beautiful #changemaker daughter Anna, age 4, who lives with a rare form of ComplexCHD. #iamnumber17 #individuallyrarecollectivelycommon #RareDiseasesIreland
#RareDiseaseDay2024
#IamNumber17 can be viewed in St Stephen's Green up to March 23
Don't miss this opportunity to meet the 17 #changemakers. If you live with or care for someone with a #raredisease please share your story on social media using #IamNumber17
#StrongerTogether #RareDiseaseDay
#Iamnumber17 campaign, highlighting Rare Diseases is now on display in Stephenโs Green, for the public to learn about the 17 lives from the 300k families affected by #RareDiseases in Ireland.
#individuallyrarecollectivelycommon
#StrongerTogether
@rareireland
@RareDiseasesIE
So proud of Ciara, with all she has to cope with living with chronic condition, she always manages to stay positive. Delighted to be part of #iamnumber17
#RareDisease @RareDiseasesIE
@rareireland
Huge thanks to Aoife Callan @TakedaPharma & the team @hanovertweets Dublin for driving this forward.
And of course the 17 change makers without whom there would be no #IamNumber17 awareness campaign.
#NothingAboutUsWithoutUs
#IndividuallyRareCollectivelyCommon
#StrongerTogether
Well done to @TakedaPharma, @RareDiseasesIE, @rareireland, those living with #RareDisease and the photographers, for bringing awareness through the impactful #IAmNumber17 campaign in Stephens Green. A powerful initiative showing that rare isn't always as rare as we think! ๐
So many persons living with an #IndividuallyRareCollectivelyCommon rare condition are non speaking or have communication challenges.
Great to see this free event! Iโm looking forward to hearing future plans in increasing community awareness.
#NonSpeaking #RareDiseaseCommunity
Join us for a morning of conversation about communication! Hear how you can apply for financial bursaries and listen to the experts, advocates and those living with communication difficulties! #slcn #communication #speechandlanguage #slcn
https://t.co/RdH7s9xQCM
๐ฏ for other areas of the health service there would be outrage.
But for #IndividuallyRareCollectivelyCommon rare conditions this is the reality & itโs not acceptable or reasonable.
Drastic action needed.
#GetRareAware #WeAre300kPlus
#EndTheWait
"We wouldn't dream of allowing a 5 year waiting list in other areas of the health service" Vicky McGrath CEO @RareDiseasesIE speaking on @drivetimerte about under resourced genetic services. #GetRareAware @roinnslainte @dcediy
And to all those who couldn't make it yesterday roll on #GetRareAware 2024!
Huge thanks to everyone that shared their stories & of course all those living with rare diseases who put their trust and faith in us.
#NothingAboutUsWithoutUs
#IndividuallyRareCollectivelyCommon
Many of our members are family carers who provide care, support & advocacy for their loved ones living with a rare condition.
We support National Carers Week which begins today.
#MakingCaringVisible #CarersWeek2023
#IndividuallyRareCollectivelyCommon #RareCommunity
The 17th National Carers Week starts today! Over 80 events are lined up; including quizzes, information sessions, excursions, lunches, walks, yoga, wellbeing events, podcast launches, and care package giveaways for hundreds of family carers. #CarersWeek2023 #MakingCaringVisible.
Please support this survey & support highlighting the substantial unmet needs of the #RareCommunity when it comes to psychological support
Support is necessary in this area for #PLWRD ,their families & carers.
#IndividuallyRareCollectivelyCommon #RareDisease
Are you a person living with a rare condition? Are you caring for someone with a rare condition? The National Rare Disease Office is conducting a survey to explore the need for psychological supports for #PLWRD in Ireland. To take part go to
https://t.co/rRsYZvtlro
Weโre very much looking forward to this upcoming webinar from #RAiN
The #RareCommunity has a high level of unmet needs & a more holistic approach is required to support #PLWRD & their families.
Weโre a large community & #IndividuallyRareCollectivelyCommon #RareDiseaseResearch
#RAiN's next webinar is on the 04th of May, 11-13.00 (GMT+1), Solution-focused Interventions to Address the Unmet Needs of People Living with #RareDisease @EUErasmusPlus showcase by @UPorto @TallinnUni @ucddublin register for this free webinar https://t.co/3CLcw8a90s
We need to see an end to the stigma attached to โdiseaseโ 300k plus living with an #IndividuallyRareCollectivelyCommon rare disease
Massive public awareness needed in what a rare disease is & how many there are
Est. 10000 different rare diseases currently known #EndTheStigma
Majority of #IndividuallyRareCollectivelyCommon rare diseases are diagnosed in childhood. Often one parent becomes a #FamilyCarer
Support for carers is essential & awareness of the work they do
#RareFamilyCarers #CarersWeek2023
Excited to partner with @CareAllianceIrl for #CarersWeek2023 12-18th June 2023
Many of our members are #FamilyCarers caring for loved ones living with a #RareDisease
Advocating for improved support & care for family carers is important to us.
Thanks for a wonderful day.
What an honor it has been to meet this truly incredible family. Thank you for all your trust in your doctors and scientists. #RareDiseaseDay2023 #IndividuallyRareCollectivelyCommon
Scientific advances, including innovative technology like OGM, can aid researchers working with rare and challenging genetic disorders. On #RareDiseaseDay, learn how the team @radboudumc used #OGM to help solve a genetic mystery. https://t.co/p0PvnsvDKD
And so it should be - #IndividuallyRareCollectivelyCommon - therer are 300,000 of us sending the Twitter world bonkers in Ireland ๐๐๐ช
#RareDiseaseDay2023 is today
Shout out to all my friends in the Rare Community. I thank god every day I found my tribe following our rare diagnosis #22q11 in 2021.
@rareireland @22Q11_Ireland @RareDiseasesIE @RAiNAllIreland
#IndividuallyRareCollectivelyCommon #StrongerTogether
This is really encouraging to hear & hoping #individuallyrarecollectivelycommon rare diseases will be high on the agenda. 30 million #PLWRD & their families across Europe. @eurordis @rareireland @RareDiseasesIE @22Q11_Ireland @our_rare_road @VasculitisIA
BREAKING: @Europarl_EN plenary approves the setting up of a new sub-committee for Public #Health.
The #EU is fighting cancer, rolling out vaccines, prioritising patients & leveling up on healthcare across Europe. Now we have a permanent forum to discuss these key issues ๐๐๐ฅ
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