RAIRDA

Health information, PIF TICK and rare disease survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

Please complete the survey if your organisation is not PIF TICK certified➡️

www.surveymonkey.com/r/ZHD8JPP

Health information, PIF TICK and rare disease survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

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.

Health information, PIF TICK and rare disease survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

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.

Health information, PIF TICK and rare disease survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

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/...

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

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

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/...

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/

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/

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/