Discover and read the best of Twitter Threads about #rarediseaseday2022
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***BIG NEWS***
We couldn’t be more delighted with this #RareDiseaseDay announcement of a new Rare Disease Clinical Trial Network, from @hrbireland. And we're very proud to be part of it.
Full press release 👉 bit.ly/3ssuejN
A thread 🧵 (1/6)...
We couldn’t be more delighted with this #RareDiseaseDay announcement of a new Rare Disease Clinical Trial Network, from @hrbireland. And we're very proud to be part of it.
Full press release 👉 bit.ly/3ssuejN
A thread 🧵 (1/6)...
Congratulations to Prof Rachel Crowley (@rachsail) & Prof Cormac McCarthy, of @UCDMedicine, for their drive to make a difference to the rare disease patients that they see in their clinics & people living with rare diseases all across the country.
#RareDiseaseDay (2/6)
#RareDiseaseDay (2/6)
Kudos to @hrbireland for getting behind their vision and for making such a big commitment to rare diseases, beyond their already significant commitments through the HRCI-HRB Joint Funding Scheme & other schemes.
@DonnellyStephen welcomed the announcement.
#RareDiseaseDay (3/6)
@DonnellyStephen welcomed the announcement.
#RareDiseaseDay (3/6)
Today @GeneticAll_UK is launching a new report, ‘Good Diagnosis:Improving the experiences of #diagnosis for people living with rare conditions’.
Read the full report geneticalliance.org.uk/gauk-news/news…
#GeneticAllianceUK
#RareDiseaseDay2022
#RareDiseaseDay
Read the full report geneticalliance.org.uk/gauk-news/news…
#GeneticAllianceUK
#RareDiseaseDay2022
#RareDiseaseDay
Over a third of people living with a #RareCondition
will wait for more than five years to obtain a
definitive #diagnosis, often receiving a number of
#misdiagnoses along the way
#RareDiseaseDay2022
#RareDiseaseDay
will wait for more than five years to obtain a
definitive #diagnosis, often receiving a number of
#misdiagnoses along the way
#RareDiseaseDay2022
#RareDiseaseDay
The ‘diagnostic odyssey’ is a term used to describe the time taken between a patient first developing #symptoms and receiving a correct #MedicalDiagnosis. This can be a long and eventful journey.
#RareDiseaseDay2022
#RareDiseaseDay
#RareDiseaseDay2022
#RareDiseaseDay
