RAIRDA
@rairda.bsky.social
The Rare AutoImmune Rheumatic Disease Alliance (RAIRDA) brings together @LUPUSUK, @wearesruK, @vascuk & @SjogrensUK to campaign for rare disease patients.
Earlier this month we attended @mabonapgwynfor.bsky.social's Senedd event on finding common ground in rare diseases. A valuable opportunity to discuss the findings of our Rare Care Matters report and recommendations for improving outcomes for people with RAIRDs with MSs and sector leaders.
October 28, 2025 at 1:41 PM
Earlier this month we attended @mabonapgwynfor.bsky.social's Senedd event on finding common ground in rare diseases. A valuable opportunity to discuss the findings of our Rare Care Matters report and recommendations for improving outcomes for people with RAIRDs with MSs and sector leaders.
We recently took part in an insightful consensus workshop, as part of a wider project focused on developing a quality standard for rare diseases. We look forward to progressing with this key project to make a real positive improvement on the lives of people with rare diseases.
August 14, 2025 at 12:29 PM
We recently took part in an insightful consensus workshop, as part of a wider project focused on developing a quality standard for rare diseases. We look forward to progressing with this key project to make a real positive improvement on the lives of people with rare diseases.
Find below some recent updates including RAIRDA's statement to the 10 Year Health Plan for England and recent engagements with parliamentarians. We will continue to advocate for better outcomes for people with RAIRDs in the UK. Find more information here ➡️https://shorturl.at/QRvAy
August 7, 2025 at 12:25 PM
Find below some recent updates including RAIRDA's statement to the 10 Year Health Plan for England and recent engagements with parliamentarians. We will continue to advocate for better outcomes for people with RAIRDs in the UK. Find more information here ➡️https://shorturl.at/QRvAy
A new study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis, #Vasculitis, #Behçet’s & #Scleroderma.
📢 Your experience can help shape the findings.
🔗 www.tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
📢 Your experience can help shape the findings.
🔗 www.tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
August 5, 2025 at 2:53 PM
A new study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis, #Vasculitis, #Behçet’s & #Scleroderma.
📢 Your experience can help shape the findings.
🔗 www.tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
📢 Your experience can help shape the findings.
🔗 www.tinyurl.com/RAISE2025
#RAIRDA #RAREdisease #PatientVoice
Improving quality of life and empowering everyone with greater knowledge and support are crucial themes highlighted in our Rare Care Matters report. Implementing RAIRDA's recommendations is key to improving care for patients with RAIRDs.
Click here to learn more➡️www.rairda.org
Click here to learn more➡️www.rairda.org
August 1, 2025 at 1:22 PM
Improving quality of life and empowering everyone with greater knowledge and support are crucial themes highlighted in our Rare Care Matters report. Implementing RAIRDA's recommendations is key to improving care for patients with RAIRDs.
Click here to learn more➡️www.rairda.org
Click here to learn more➡️www.rairda.org
Earlier this year, we published the Rare Care Matters report, produced alongside @ipsos. The findings showed significant variations in patient experience and that more must be done to improve care for patients with RAIRDs. Read the report in full here: rairda.org/rare-care-ma...
July 29, 2025 at 10:44 AM
Earlier this year, we published the Rare Care Matters report, produced alongside @ipsos. The findings showed significant variations in patient experience and that more must be done to improve care for patients with RAIRDs. Read the report in full here: rairda.org/rare-care-ma...
Reposted by RAIRDA
Want to learn about Clinical Trials?
Hear from Professor Anisur Rahman (@anisurrahman.bsky.social), Ellie Hawkins, Sherron and Debbie in our brand new video: “What are Clinical Trials? How they Work, Why they Matter & Patient Experiences” over on our YouTube channel!
🎥 bit.ly/LupusUKOfficial
Hear from Professor Anisur Rahman (@anisurrahman.bsky.social), Ellie Hawkins, Sherron and Debbie in our brand new video: “What are Clinical Trials? How they Work, Why they Matter & Patient Experiences” over on our YouTube channel!
🎥 bit.ly/LupusUKOfficial
July 18, 2025 at 2:48 PM
Want to learn about Clinical Trials?
Hear from Professor Anisur Rahman (@anisurrahman.bsky.social), Ellie Hawkins, Sherron and Debbie in our brand new video: “What are Clinical Trials? How they Work, Why they Matter & Patient Experiences” over on our YouTube channel!
🎥 bit.ly/LupusUKOfficial
Hear from Professor Anisur Rahman (@anisurrahman.bsky.social), Ellie Hawkins, Sherron and Debbie in our brand new video: “What are Clinical Trials? How they Work, Why they Matter & Patient Experiences” over on our YouTube channel!
🎥 bit.ly/LupusUKOfficial
The 23rd July is World Sjögren's Day and focuses entirely on you! 📢 Use #ProudWithSjögrens to join the conversation and learn more about Sjögren's UK and ways you can support on their website ➡️ sjogrensuk.org
July 23, 2025 at 2:23 PM
The 23rd July is World Sjögren's Day and focuses entirely on you! 📢 Use #ProudWithSjögrens to join the conversation and learn more about Sjögren's UK and ways you can support on their website ➡️ sjogrensuk.org
The 10-Year Health Plan for England includes some welcome steps, but must go further to meet the needs of people with RAIRDs, and deliver the specialist care and support they need.
Read our full statement➡️https://shorturl.at/zo2mK
Read our full statement➡️https://shorturl.at/zo2mK
July 8, 2025 at 2:01 PM
The 10-Year Health Plan for England includes some welcome steps, but must go further to meet the needs of people with RAIRDs, and deliver the specialist care and support they need.
Read our full statement➡️https://shorturl.at/zo2mK
Read our full statement➡️https://shorturl.at/zo2mK
Reposted by RAIRDA
NEW RESEARCH—Exposure to #hydroxychloroquine in early #pregnancy and incidence of pre-eclampsia and pre-term delivery in patients with systemic #lupus erythematosus in Sweden: a nationwide population-based cohort study bit.ly/3FBPz3J @rheumepi.bsky.social
Plus, linked Comment bit.ly/3Tknh0D
Plus, linked Comment bit.ly/3Tknh0D
June 13, 2025 at 6:00 AM
NEW RESEARCH—Exposure to #hydroxychloroquine in early #pregnancy and incidence of pre-eclampsia and pre-term delivery in patients with systemic #lupus erythematosus in Sweden: a nationwide population-based cohort study bit.ly/3FBPz3J @rheumepi.bsky.social
Plus, linked Comment bit.ly/3Tknh0D
Plus, linked Comment bit.ly/3Tknh0D
Reposted by RAIRDA
🚨 Do men with #lupus receive the support they need?
😃 Join us today at room C3, as @rickychotai.co.uk, Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE.
#EULAR2025
😃 Join us today at room C3, as @rickychotai.co.uk, Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE.
#EULAR2025
June 12, 2025 at 10:02 AM
🚨 Do men with #lupus receive the support they need?
😃 Join us today at room C3, as @rickychotai.co.uk, Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE.
#EULAR2025
😃 Join us today at room C3, as @rickychotai.co.uk, Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE.
#EULAR2025
Reposted by RAIRDA
Want to learn more about #lupus this #WorldLupusDay? 🌍💜
Here are some of the many symptoms associated with the condition.
For more information and support visit www.lupusuk.org.uk
#MakeLupusVisible #LupusAwareness #SLE #CutaneousLupus #HiddenDisability #ChronicIllness #AutoimmuneDisease
Here are some of the many symptoms associated with the condition.
For more information and support visit www.lupusuk.org.uk
#MakeLupusVisible #LupusAwareness #SLE #CutaneousLupus #HiddenDisability #ChronicIllness #AutoimmuneDisease
May 10, 2025 at 11:01 AM
Want to learn more about #lupus this #WorldLupusDay? 🌍💜
Here are some of the many symptoms associated with the condition.
For more information and support visit www.lupusuk.org.uk
#MakeLupusVisible #LupusAwareness #SLE #CutaneousLupus #HiddenDisability #ChronicIllness #AutoimmuneDisease
Here are some of the many symptoms associated with the condition.
For more information and support visit www.lupusuk.org.uk
#MakeLupusVisible #LupusAwareness #SLE #CutaneousLupus #HiddenDisability #ChronicIllness #AutoimmuneDisease
June is #SclerodermaAwarenessMonth. @wearesruk.bsky.social is raising awareness with their short film #SayScleroderma.
🎥 Watch the film and learn more about scleroderma and ways you can support on their website ➡️https://www.sruk.co.uk/
#Scleroderma
🎥 Watch the film and learn more about scleroderma and ways you can support on their website ➡️https://www.sruk.co.uk/
#Scleroderma
June 19, 2025 at 8:05 AM
June is #SclerodermaAwarenessMonth. @wearesruk.bsky.social is raising awareness with their short film #SayScleroderma.
🎥 Watch the film and learn more about scleroderma and ways you can support on their website ➡️https://www.sruk.co.uk/
#Scleroderma
🎥 Watch the film and learn more about scleroderma and ways you can support on their website ➡️https://www.sruk.co.uk/
#Scleroderma
🔎 The RAISE study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis #Vasculitis #Behçet’s and #Scleroderma.
Find our more and complete the survey here ⤵️
www.tinyurl.com/RAISE2025
Your experience is essential to their research! @scicommsuwe.bsky.social
Find our more and complete the survey here ⤵️
www.tinyurl.com/RAISE2025
Your experience is essential to their research! @scicommsuwe.bsky.social
June 12, 2025 at 2:01 PM
🔎 The RAISE study is looking at what NHS support is needed by people with #Sjögren’s, #Lupus, #Myositis #Vasculitis #Behçet’s and #Scleroderma.
Find our more and complete the survey here ⤵️
www.tinyurl.com/RAISE2025
Your experience is essential to their research! @scicommsuwe.bsky.social
Find our more and complete the survey here ⤵️
www.tinyurl.com/RAISE2025
Your experience is essential to their research! @scicommsuwe.bsky.social
Today is #WorldVasculitisDay. Vasculitis is a rare autoimmune rheumatic condition. We're campaigning for improved care for everyone affected.
May 15, 2025 at 3:07 PM
Today is #WorldVasculitisDay. Vasculitis is a rare autoimmune rheumatic condition. We're campaigning for improved care for everyone affected.
Reposted by RAIRDA
One week to go until #WorldLupusDay! 🌏💜
Have you seen our official poster for 2025?
You can order physical copies of our poster here: https://lupusuk.org.uk/order-awareness-supplies/
or download a pdf version here: https://lupusuk.org.uk/world-lupus-day-may-10th/
Have you seen our official poster for 2025?
You can order physical copies of our poster here: https://lupusuk.org.uk/order-awareness-supplies/
or download a pdf version here: https://lupusuk.org.uk/world-lupus-day-may-10th/
May 3, 2025 at 3:02 PM
One week to go until #WorldLupusDay! 🌏💜
Have you seen our official poster for 2025?
You can order physical copies of our poster here: https://lupusuk.org.uk/order-awareness-supplies/
or download a pdf version here: https://lupusuk.org.uk/world-lupus-day-may-10th/
Have you seen our official poster for 2025?
You can order physical copies of our poster here: https://lupusuk.org.uk/order-awareness-supplies/
or download a pdf version here: https://lupusuk.org.uk/world-lupus-day-may-10th/
This week RAIRDA released its latest report, in partnership with Ipsos.
"Rare Care Matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients."
See below three of the report's key findings. rairda.org/publication/...
"Rare Care Matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients."
See below three of the report's key findings. rairda.org/publication/...
May 2, 2025 at 1:36 PM
This week RAIRDA released its latest report, in partnership with Ipsos.
"Rare Care Matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients."
See below three of the report's key findings. rairda.org/publication/...
"Rare Care Matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients."
See below three of the report's key findings. rairda.org/publication/...
Reposted by RAIRDA
Report added to the hub from @rairda.bsky.social - Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients. www.pslhub.org/learn/patien... #patientsafety
Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients (April 2025)
Report highlighting the health inequalities for patients living with rare autoimmune rheumatic disease
www.pslhub.org
April 30, 2025 at 1:55 PM
Report added to the hub from @rairda.bsky.social - Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients. www.pslhub.org/learn/patien... #patientsafety
The Rare Care Matters report sets out policy recommendations which RAIRDA want to see implemented by the Government and the NHS. Our Co-Chair Bridget Griffiths, highlights some of these recommendations below:
Read the full report:
➡️https://shorturl.at/HVLni
Read the full report:
➡️https://shorturl.at/HVLni
May 1, 2025 at 8:54 AM
The Rare Care Matters report sets out policy recommendations which RAIRDA want to see implemented by the Government and the NHS. Our Co-Chair Bridget Griffiths, highlights some of these recommendations below:
Read the full report:
➡️https://shorturl.at/HVLni
Read the full report:
➡️https://shorturl.at/HVLni
For more detail on the challenges faced by people living with RAIRDs, read the Rare Care Matters report, released this week.
The full report is available on our website: rairda.org/publication/...
The full report is available on our website: rairda.org/publication/...
April 30, 2025 at 9:48 AM
For more detail on the challenges faced by people living with RAIRDs, read the Rare Care Matters report, released this week.
The full report is available on our website: rairda.org/publication/...
The full report is available on our website: rairda.org/publication/...
Many thanks to Peter Dowd MP for lending his support to people living with RAIRDs.
Read the full Rare Care Matters report on our website:
👉https://rairda.org/publication/report2025/
Read the full Rare Care Matters report on our website:
👉https://rairda.org/publication/report2025/
April 30, 2025 at 9:47 AM
Many thanks to Peter Dowd MP for lending his support to people living with RAIRDs.
Read the full Rare Care Matters report on our website:
👉https://rairda.org/publication/report2025/
Read the full Rare Care Matters report on our website:
👉https://rairda.org/publication/report2025/
Reposted by RAIRDA
A new report by RAIRDA @rairda.bsky.social reveals that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment.
Read the full report at rairda.org/publication/report2025/
Read the full report at rairda.org/publication/report2025/
April 29, 2025 at 1:03 PM
A new report by RAIRDA @rairda.bsky.social reveals that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment.
Read the full report at rairda.org/publication/report2025/
Read the full report at rairda.org/publication/report2025/
Great to see @Independent shining a light on our latest report. The upcoming 10-year plan offers a vital opportunity to improve care and ensure people with RAIRDs are not left feeling “totally alone with their disease”. ➡️https://shorturl.at/8BDcx
April 29, 2025 at 8:30 AM
Great to see @Independent shining a light on our latest report. The upcoming 10-year plan offers a vital opportunity to improve care and ensure people with RAIRDs are not left feeling “totally alone with their disease”. ➡️https://shorturl.at/8BDcx
Today, RAIRDA has released the Rare Care Matters report, which reveals that some individuals with rare autoimmune rheumatic diseases (RAIRDs) in the UK encounter major barriers in accessing care and treatment.
Read the full report on our website
👉https://rairda.org/publication/report2025/
Read the full report on our website
👉https://rairda.org/publication/report2025/
April 29, 2025 at 8:24 AM
Today, RAIRDA has released the Rare Care Matters report, which reveals that some individuals with rare autoimmune rheumatic diseases (RAIRDs) in the UK encounter major barriers in accessing care and treatment.
Read the full report on our website
👉https://rairda.org/publication/report2025/
Read the full report on our website
👉https://rairda.org/publication/report2025/
Today is the last day to complete the second consultation survey on a set of quality statements for rare disease.
Your insights are key to ensuring these statements reflect what truly matters to people living with rare diseases
👉https://rarediseaseqs.org/
Your insights are key to ensuring these statements reflect what truly matters to people living with rare diseases
👉https://rarediseaseqs.org/
April 22, 2025 at 8:03 AM
Today is the last day to complete the second consultation survey on a set of quality statements for rare disease.
Your insights are key to ensuring these statements reflect what truly matters to people living with rare diseases
👉https://rarediseaseqs.org/
Your insights are key to ensuring these statements reflect what truly matters to people living with rare diseases
👉https://rarediseaseqs.org/