Top Tweets for #RAIRDs
๐จToday is #RareDiseaseDay!๐จ
NEIAA collects diagnosis data for Rare Autoimmune Rheumatic Diseases (#RAIRDs). The 2024 NEIAA report delivers a first-ever national benchmark for these diseases in England & Wales! ๐ฌ๐
Find out more: https://t.co/4Vi6efxaxo
๐๐ Today is Rare Disease Day! ๐๐
Together, we stand with the 300 million people worldwide living with rare diseases. In uniting on this day we can raise awareness, advocate for change, and promote a more equitable future! โ๏ธ
Learn more: https://t.co/AUKfGZJLJB
@bloodcancer_uk Some people with #blood #cancer, alongside those with #organ #transplants, #RAIRDs and other #immunocompromised people have had inadequate/no response to #Covid vaccines and remain unprotected & at high risk. We STILL need #PrEP #monoclonal #antibodies @GwynneMP @wesstreeting
This yearโs #NEIAA report features updates on:
๐ โข Timeliness of treatment
โ
โข Confirmed case inclusion
๐ โข Rare autoimmune rheumatic diseases (RAIRDs)
Explore the full findings of the audit on our website: https://t.co/uBqI4bIEPJ
#RAIRDs #Rheumatology #EIA #Audit
Our October issue is live! Including #pregnancy outcome predictors in #SLE, #Raynauds in #SystemicSclerosis, #Sjรถgrens disease-associated #lymphoma, plus much more! https://t.co/nv6Ef1MA30
Cover by Chiara Vercesi
People with RAIRDs are often overlooked in health policy and investment. It is key that NHS services donโt lose sight of people living with rare conditions. #RAIRDs #RAIRDaware #HealthcarePolicy
Delays to diagnosis and inadequate care can significantly reduce life expectancy and quality of life for RAIRD patients. There is a need for timely and effective treatment. #RAIRDs #RAIRDaware #TimelyCare
It's crucial that care and treatment for RAIRDs patients are equitable. Prevalence should not determine patient outcomes. #RAIRDs #RAIRDaware #HealthcareEquality
Did you know that approximately 170,000 people with #RAIRDs live in the UK?
We are #RareButNotForgotten
#RareDiseaseDay takes place on 28th February, learn more here: https://t.co/twkggE20lV
@rarediseaseday
๐Reminder to people with #RAIRDs invitations to the @MELODYStudyUK have been posted this week.
The study is quick and easy. It involves:
1. Completing an online questionnaireโ
2. Doing a finger-prick blood test at home๐ฉธ
Find out more here: https://t.co/YcXzWpZQfg
Invitations to people with rare autoimmune rheumatic diseases and lymphoma are being posted from Monday 14 Feb.
Please spread the word! @VascUK @LUPUSUK @RAIRDA_org @WeAreSRUK @UKMyositis
@drhectorchinoy @LatikaGupta_ @LymphomaAction
Around 500,000 people in the UK are #immunosuppressed, including some people with #RAIRDS on certain treatments. Many do not get the same level of protection from the COVID-19 vaccines as everyone else.
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