We campaign for improved care for people living with rare autoimmune rheumatic diseases in the UK #RAIRDAware
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#RAIRDaware
Latest posts tagged with #RAIRDaware on Bluesky
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Posts tagged #RAIRDaware
Happy New Year! In 2025, we will continue to advocate for the improvement of care for people with rare autoimmune rheumatic diseases #RAIRDAware
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Thank you so much to @JimShannonMP for tabling a Westminster Hall debate earlier this week on RAIRDs. The debate was an unique opportunity to raise awareness on this matter.
It was great to see him talk about the present challenges faced by people with RAIRDs. #RAIRDAware
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Great to see @drlukeevans highlighting RAIRDA's 2024 manifesto calls for rare diseases to remain a priority, a quality standard for rare diseases, and better support for specialist networks. #RAIRDAware
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We were delighted to hear @Peter_Dowd raising the importance of working together to ensure people with RAIRDs are not left behind. #RAIRDAware
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Treatment options for many RAIRDs at present are limited, and where they do exist, they may not be suitable for all patients #RAIRDAware
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Treatment options for many RAIRDs are currently limited, and even when available, they may not be suitable for all patients #RAIRDAware
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Early diagnosis is vital for good patient outcomes.
Nearly half of respondents to our 2022 survey reported waiting over 3 years from symptom onset to diagnosis. Read more here👉https://shorturl.at/zLczs
#RAIRDaware
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This morning RAIRDA Co-Chair Sue Farrington met with @JimShannonMP to discuss how we can drive improvements in care and treatment for people living with rare autoimmune rheumatic diseases.
Thank you Jim for your support for this vital cause. #RAIRDAware
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People with RAIRDs are often overlooked in health policy and investment. It is key that NHS services don’t lose sight of people living with rare conditions. #RAIRDs #RAIRDaware #HealthcarePolicy
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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
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While 80% of rare diseases are genetic and mostly affect children, RAIRDs lack a clear genetic cause and typically begin in adulthood #RAIRDaware
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It's crucial that care and treatment for RAIRDs patients are equitable. Prevalence should not determine patient outcomes. #RAIRDs #RAIRDaware #HealthcareEquality
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Rare autoimmune rheumatic diseases (RAIRDs) cause the immune system to attack healthy tissues in multiple organs. Due to their complex nature, patients often need cross-speciality care. #RAIRDaware #AutoimmuneDiseases
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In the UK, over 170,000 people live with rare autoimmune rheumatic diseases such as vasculitis, lupus, Sjӧgren’s and scleroderma. #RAIRDaware #AutoimmuneDiseases
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RAIRDs are a range of conditions in which the body’s immune system damages its own tissues. These conditions include vasculitis, lupus, scleroderma, and Sjögren’s syndrome. RAIRDs can be life-threatening and significantly life-altering. #RAIRDaware #AutoimmuneDiseases #Health
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With a new Government, RAIRDA will continue to advocate for the vital improvements needed in RAIRD care, including:
1⃣ Ensuring rare diseases to remain a priority
2⃣ Developing a quality standard for rare diseases
3⃣ Creating and funding regional specialised networks
#RAIRDaware
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Final hours to complete our survey! Are you in the UK with a rare autoimmune rheumatic disease? We want to understand your experiences so we can advocate for better care. Share your insights now: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice @LUPUSUK @WeAreSRUK @vascuk...
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Only 1 day left to share your voice! If you are in the UK, with a rare autoimmune rheumatic disease, your input is crucial. Help us enhance care by completing our survey: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Only a few days left to complete our survey! Share your insights and help shape the future of care for Rare Autoimmune Rheumatic Diseases. Don't miss out—participate now: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientExperience @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Your voice matters! Join us in our mission to improve care for those living with Rare Autoimmune Rheumatic Diseases: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice @Lupusuk @WeAreSRUK @vascuk #BSSA
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This is the final week to complete our RAIRD survey! Share your experiences and help us improve care: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Still have not taken part in our RAIRD survey? Do not miss out on this opportunity to make a difference: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientCare #HealthcareSurvey @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Together, we can identify areas for improvement and advocate for better care. Take part in our survey today: https://ipsos.uk/RAIRDAsurvey2024 #PatientAdvocacy #RAIRDaware @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Every contribution counts! Take a few moments to complete our survey and be a part of the solution: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientFeedback #RAIRDcommunity @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Share your insights today by following this link: https://ipsos.uk/RAIRDAsurvey2024 #PatientAdvocacy #RAIRDcommunity #RAIRDaware @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Help us make a difference in the lives of those living with RAIRD. Share your experiences and insights in our survey today: https://ipsos.uk/RAIRDAsurvey2024 #HealthcareSurvey #PatientFeedback #RAIRDaware @LUPUSUK @WeAreSRUK @vascuk #BSSA
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Take a few moments to complete our survey and make a difference:https://ipsos.uk/RAIRDAsurvey2024 @LUPUSUK @vascuk @WeAreSRUK #BSSA #PatientCare #RAIRDaware
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Have you taken part in our RAIRD survey yet? https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice
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Have you taken part in our RAIRD survey yet? Your feedback is invaluable in shaping the future of care for rare autoimmune rheumatic diseases. Share your insights today: https://ipsos.uk/RAIRDAsurvey2024 #RAIRDaware #PatientVoice
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