Want to help make a difference within the lupus community?
We are seeking compassionate and dedicated individuals to join our team as Home-Based Support and Information Line Volunteers. 💜
This role is ideal for someone with lived experience of #lupus who wants to make a meaningful difference.
RAIRDA welcomed the publication of the England Rare Diseases Action Plan 2026 and the inclusion of the quality standard for rare diseases. We are proud of this important piece of work, developed collaboratively by the rare disease community.
Read more 👇🔗
rairda.org/nice-quality...
This quality standard informs standard of care and enables people living with rare diseases to know what good care looks like. It sets standards that if met could improve outcomes across the rare disease pathway.
Read more about RAIRDA's involvement here ➡️ rairda.org/nice-quality...
The development was led by the rare disease project group following discussions in the UK Rare Diseases Forum, and has centred the voices of those with lived experience throughout the process.
RAIRDA welcomes the publication of the NICE Quality Standard for Rare Disease. This quality standard marks the first developed collaboratively between NICE and the patient community.
www.nice.org.uk/guidance/qs214
We're on Linkedin! For all the latest from RAIRDA and our member charities, give us a follow➡️
www.linkedin.com/company/1113...
If you follow the Islamic Faith and plan to fast during the holy month of Ramadan, we have a webinar about keeping well during #Ramadan with #lupus, featuring Professor Anisur Rahman from UCLH.
You can watch the #webinar on our YouTube Channel: https://bit.ly/4kGWAQF 💜
Please complete the survey if your organisation is not PIF TICK certified➡️
www.surveymonkey.com/r/ZHD8JPP
The purpose of this survey is to understand the barriers rare disease patient organisations face in producing health information and joining the PIF TICK certification scheme. The survey is being run by PIF on behalf of DHSC.
The PIF TICK is the UK Trust Mark for Health Information. It is operated by a charity, the Patient Information Forum (PIF), on a not-for-profit basis.
150 organisations are certified by PIF TICK.
Information and support are vital for people living with rare diseases, yet it can be difficult for people to find information they can trust. The Rare Disease Action Plan recommends signposting patients to PIF TICK-certified health information.
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.
We thank Jim Shannon MP for taking the time to have ongoing conversations with us and championing RAIRDs in Parliament. Our discussion centred on our Rare Care Matters report recommendations, our work with the quality standard for rare disease and recent policy developments.
Thank you to James Evans MS for taking the time to meet with us last month and being a champion of RAIRDs. We took the opportunity to talk about the implementation our our Rare Care Matters report recommendations in Wales.
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
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
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...
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
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
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
🚨 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
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
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
🔎 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
Today is #WorldVasculitisDay. Vasculitis is a rare autoimmune rheumatic condition. We're campaigning for improved care for everyone affected.
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/
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/...
