Top Tweets for #Rarediseae
Help others learn more about #immunoglobulin and why it saves the lives of people with primary immunodeficiency (and others) by sharing this reel!
#rarediseae #plasma #antibodies #ivig #subq
Thank you @EITHealth Breanndán Casey for the opportunity to speak at the connected health and wellbeing cluster conference today @DkIT_ie highlighted the importance of data integration and data sharing in #rarediseae and cross boarder collaboration @RAiNAllIreland @a_j_mcknight
All the very best wishes Niamh! Sorry for missing your presentation today. This #PhD study is focused to understand the social and economic impact of living with #rarediseae on the child and family #social #economic @orladoyle_econ @NaoKody @a_j_mcknight @RAiNAllIreland
Niamh Buckle presents “Family Fortunes”. Discussing about costs associated with caring for a child with a #raredisease. Co designing a solution to address the challenges which could lead to policy improvements @sujas15
Early start @IrishRail to Belfast @QUBelfast @CPH_QUB for @RAiNAllIreland early career research forum! Congratulations to all #ECR who will be showcasing their excellent work #rarediseae ~8000 conditions >410000 PLWRD on the Island of Ireland follow us today for more updates 🙃
Many people with #primaryimmunodeficiencies rely on #immunoglobulin (Ig) therapy for lifesaving treatments. Retweet this and help others learn about what Ig therapy is and how it helps! 💙 #rarediseae #plasma #antibodies #ivig #subq
Did you know...??
- 4.2% children diagnosed with #RareDiseae by age 17
- 70% #RareDiseases first symptomatic in childhood
- 90% rare childhood diseases have neurological impact
@CHI_Ireland @CHIatTallaght @TempleStreetHos @CHIatCrumlin @CeoHardiman @HSELive @CcoHse @naiireland
Many people with #primaryimmunodeficiency rely on immunoglobulin (Ig) therapy for lifesaving treatments. Learn more about what Ig therapy is and how it helps at https://t.co/pRT99ikXrt! 💙
#rarediseae #plasma #antibodies #ivig #subq
For @curehht, building a patient-centric research network means:
🔎 Identifying critical gaps in #RareDiseae research
🗺️ Creating a strategic research roadmap
🫱🏼🫲🏿 Ensuring patient voice is prioritized
Learn more about their work in #RareAsOne ➡️ https://t.co/4jr9b03Jtm
Watch this space. In one week, the #Dazzle4Rare podcast goes live with our first guest, @PIPManchester Sam Fillingham. She chats with @thekattdazzle about starting the Poland syndrome registry & more! #podcast #rarediseae
As we know half of patients with #Rarediseae are #Children and this an interesting article to read. How families have long pushed to speed up cures, usually by forming foundations that seed money for research @AlanFinglas1 @rareireland https://t.co/50V0UL6PzY
Migraines! UGH! Who gets them?? Raise your hand!
Yep...us too! #Migraines are a common feature of #APS. How do you cope with them?
Any pointers or tips you'd like to share?
#AntiphospholipidSyndrome #APSAwareness #APSMatters #migraines #migrainelife #headache #rarediseae
We are grateful for the strides made with #MSD research, and the brilliant minds who are working and collaborating to develop a treatment.
Where we once only had hope, today it's so much more.
#TogetherWeCan #CureMSD #MultipleSulfataseDeficiency #rarediseae #genechat
Sometimes, as a doctor, you meet that 1 in a 1,000,000 patient whose story touches your heart and whose memory will live on long after they’re gone! ❤️🧠🧬🥼#grateful #rarediseae #Neurology #MedTwitter
@Dr2NisreenAlwan I am a rare disease patient and also medically trained so realise how impossible it is for docs to know about all rare diseases #rarediseae #vasculitis
Are you one of the many ppl with #rarediseae that does not have a genetic diagnosis? Sharing your genetic and health data can help inform our understanding of genetics and health! @NIH has some additional tips for the #undiagnosed https://t.co/6BpAP94fkm
2 more days till #RareDiseae Day. We challenge you to write an Acrostic Poem about what Rare means to you.
Remember to use the hashtags #ShowYourStripes #ItsInMyGenes #HopeConnectsUs #RareDiseaseDay #HCUAwareness #GoBlueForHCU
I wish every doctor would include these pics when they deliver a #RareDiseae diagnosis to a family. A picture may be worth a thousand words, but this shouts the 4 best:
You. Are. Not. Alone.
Thank you advocates!!
#RareDC2020 #RareDiseaseDay
#RareDC2020 advocates ready to share their stories during tomorrow’s Capitol Hill Meetings! ADVOCATES! Remember to share your rare experience throughout this week using #RareDC2020 for a chance to win an $800 travel stipend for #raredc2021 #EveryVoiceMatters 🙌 @HorizonNews
Look forward to presenting #RAinDRoP #Rarediseae #research prioritisation project @cpcconf2019 #CPCCONF2019 on behalf of an excellent team @RareDiseasesIE @IPPOSI @HRCIreland @22Q11_Ireland @castleDD @annnlynch @HSELive @hrbireland @UCDMedicine @avrilbdaly @ERDorris @2011thilo
Good morning! #3GoodThings
1. I am grateful to have loving family and great friends
2. I am grateful to work and collaborate with amazing colleagues and part of a #Rarediseae community
3. I am grateful to be a teacher to know amazing and talented students
Thank you! 🙏🙏🙏
Grief doesn’t have a clock. Grief only stops when you die’Their experiences led to initiative of @BUMBLEance an ambulance specially designed for children. Thinking of you Tony and Mary @BeeForBattens #Rarediseae #battensdisease
https://t.co/NksmRHzHR8
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