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...
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
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.
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/...
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/
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/
Take part in the rare disease quality standard survey today. Your input is essential in ensuring these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
rarediseaseqs.org
rarediseaseqs.org
April 15, 2025 at 10:08 AM
Take part in the rare disease quality standard survey today. Your input is essential in ensuring these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
rarediseaseqs.org
rarediseaseqs.org
If you are a patient, carer, healthcare professional, policymaker, or third sector professional, your input is needed to develop a set of quality statements for rare disease.
Take part in the second survey round today⬇️🧡
rarediseaseqs.org
Take part in the second survey round today⬇️🧡
rarediseaseqs.org
April 10, 2025 at 2:23 PM
If you are a patient, carer, healthcare professional, policymaker, or third sector professional, your input is needed to develop a set of quality statements for rare disease.
Take part in the second survey round today⬇️🧡
rarediseaseqs.org
Take part in the second survey round today⬇️🧡
rarediseaseqs.org
Take part on the second round of the Rare Disease Quality Statements Survey.
Your input is needed to ensure these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
➡️https://www.research.net/r/DMSC6CC
Your input is needed to ensure these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
➡️https://www.research.net/r/DMSC6CC
April 1, 2025 at 3:44 PM
Take part on the second round of the Rare Disease Quality Statements Survey.
Your input is needed to ensure these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
➡️https://www.research.net/r/DMSC6CC
Your input is needed to ensure these statements truly reflect the needs and priorities of patients, carers, healthcare professionals, policymakers, and patient organisations.
➡️https://www.research.net/r/DMSC6CC
What does good care and treatment for rare disease mean to you? Share your voice by completing the second round of the Rare Disease Quality Statements Survey.
Find out more here ➡️https://rarediseaseqs.org/
Find out more here ➡️https://rarediseaseqs.org/
March 25, 2025 at 1:05 PM
What does good care and treatment for rare disease mean to you? Share your voice by completing the second round of the Rare Disease Quality Statements Survey.
Find out more here ➡️https://rarediseaseqs.org/
Find out more here ➡️https://rarediseaseqs.org/
The second round of the Rare Disease Quality Statements survey is now live. Your insights are crucial to help shape quality statements for rare disease.
Take part here: www.research.net/r/DMSC6CC
Take part here: www.research.net/r/DMSC6CC
March 20, 2025 at 12:46 PM
The second round of the Rare Disease Quality Statements survey is now live. Your insights are crucial to help shape quality statements for rare disease.
Take part here: www.research.net/r/DMSC6CC
Take part here: www.research.net/r/DMSC6CC
@lupusuk.bsky.social is conducting a survey to understand what is important to you as someone living with lupus, or caring for someone with #lupus, and what you think the charity should be focusing on to better support your needs.
For more information, visit: www.lupusuk.org.uk/2025/03/04/survey
For more information, visit: www.lupusuk.org.uk/2025/03/04/survey
March 12, 2025 at 11:53 AM
@lupusuk.bsky.social is conducting a survey to understand what is important to you as someone living with lupus, or caring for someone with #lupus, and what you think the charity should be focusing on to better support your needs.
For more information, visit: www.lupusuk.org.uk/2025/03/04/survey
For more information, visit: www.lupusuk.org.uk/2025/03/04/survey
It was great to hear from the new chair of the APPG on Rare, Genetic and Undiagnosed Conditions
Peter Dowd MP during the #RareDiseaseDay Westminster Reception - many thanks for all your support Peter.
Peter Dowd MP during the #RareDiseaseDay Westminster Reception - many thanks for all your support Peter.
March 3, 2025 at 3:41 PM
It was great to hear from the new chair of the APPG on Rare, Genetic and Undiagnosed Conditions
Peter Dowd MP during the #RareDiseaseDay Westminster Reception - many thanks for all your support Peter.
Peter Dowd MP during the #RareDiseaseDay Westminster Reception - many thanks for all your support Peter.
On #RareDiseaseDay, we highlight the urgent need to improve diagnosis times for people with RAIRDs. Preliminary data from RAIRDA’s 2024 patient survey, which will be released shortly, found that the average time to diagnosis from symptom onset was 2.5 years.
Read more here 👉 shorturl.at/4Qk5X
Read more here 👉 shorturl.at/4Qk5X
February 28, 2025 at 4:33 PM
On #RareDiseaseDay, we highlight the urgent need to improve diagnosis times for people with RAIRDs. Preliminary data from RAIRDA’s 2024 patient survey, which will be released shortly, found that the average time to diagnosis from symptom onset was 2.5 years.
Read more here 👉 shorturl.at/4Qk5X
Read more here 👉 shorturl.at/4Qk5X