Top Tweets for #raredisesse
The inspiration behind it all.⚡️
Join the fight. 🤜🧬
Help us turn hope into reality. 💙
#raredisesse #uba5 #Raiden #Fight4Rare #community
#ESHG2024
Another #undiagnosed #raredisesse hero @SteveLaurie42 presented on #SolveRD's successes in genome sequencing of previously undiagnosed
"Collaboration, collaboration, collaboration!"
Agreed!
Can the other state governments take similar steps? Can @PMOIndia take cognizance of the practicality & provide policy support to waive costs for rare diseases?
@CMO_Odisha @CMofKarnataka
@CMOMaharashtra @MoHFW_INDIA @MCA21India
#raredisesse #healthcare
https://t.co/Cl4CFy0wqh
Congrats @Jim_Knapp for being the first to unlock the “new challenger” badge! #kombat4rare #charity #raredisesse #fundraising #badge
Rare isn't rare. There are 400 million people touched by #raredisesse That has an effect on world economies, struggling healthcare systems, & Humans. Many conditions are likely more prevalent so HCPs can we start acknowledging patients & improve dx pathways? #Dazzle4Rare
Did you know that this week the #raredisease communities are gathering together to #Dazzle4Rare? We are too!
#Arachnoiditis might be more prevalent than previously thought, as barriers to #diagnosis, (radiologists trained to see), are common. Our
strategy includes #education
@C4Dispatches @Channel4 #LongCovid similar #scleroderma https://t.co/bFMkZRWJlC #raredisesse #autoimmune #LifeChanging #systemicsclerosis #NoCure #UnknownCause #ExpertPatient 24 years hijacked, half my life #sclerodermafreeworld #RaynaudsFreeWorld #Research eternally grateful @royalfreenhs Prof Denton💖
For those of you out there who feel this like I feel this #parenting #disability #specialneeds #raredisesse #medicalcomplexity #motherhood
New Post: A different kind of OK.
Dedicated to my fellow parents of kids with complex needs. I see you. We got this. #parenting #disability #raredisesse #specialneeds #BackToSchool2020
https://t.co/bUv2fkoZo2
We’re bringing the #raredisesse community to the #gaming community. Good gamers + Cure Rare Disease = awareness spread and funds raised. Check out today’s stream below!
Finally research that acurately reflects the patient experience....the onset of partial lipodystrophy is often well before puberty! This has long been known by the patient community. So much work to be done! #lipodystrophy #patientengagement #raredisesse https://t.co/LUFhPLJtlH
It's National #VolunteerWeek !!!! To all of my fellow #family & #patient advocates in the #raredisesse & #disability communities, thank you for all of your contributions that are improving #healthcare as we speak! #canada #familyengagement #patientengagement https://t.co/4giWNNVLAc
#recognising a #RareDisesse asap essential #diagnosis #righttreatment
#floppybaby #dysmorphicfeatures #lowapgar #malformations ask why?
@UROurHope Charity Brew TOMORROW! All sales of our new #HopeAle on #Nitro & 25% of all sales go to this great org.!
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