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.

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#lupus 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/...

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/

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/

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

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

Watch this video explaining how to complete the second round of the Rare Disease Quality Statements survey⬇️ www.youtube.com/watch?v=b90W...

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

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/

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

@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

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.

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

RAIRDA’s co-chair, Sue Farrington, reflects on our achievements over the past year and outlines our priorities for the future. To read more, visit our website. #RareDiseaseDay shorturl.at/4Qk5X

Yesterday we attended the #RareDiseaseDay Westminster Reception. It was great to hear the Minister @ashleydaltonmp.bsky.social share the government's aim to improve care and treatment for rare conditions.

Today it's #RareDiseaseDay, a global day to raise awareness for rare diseases, including rare autoimmune rheumatic diseases.

February is #RaynaudsAwarenessMonth. Visit @WeAreSRUK to support the #BePartOfTheAnswer campaign. You can take part in their online Raynaud's test by following this link 👉https://bit.ly/4jAAUor

Research results show the importance of COVID vaccination and a personalised approach for RAIRD patients 👉https://rairda.org/publication/research-results-show-the-importance-of-covid-vaccination-and-a-personalised-approach-for-raird-patients/

We campaign for improved care for people living with rare autoimmune rheumatic diseases in the UK #RAIRDAware

With the cold weather in some parts of the country ❄️, please make sure to get your Covid-19 booster! For more information on what people with RAIRDs need to know please check our website ➡️ https://rairda.org/autumn-2024-covid-19-booster-programme-key-information/

Happy New Year! In 2025, we will continue to advocate for the improvement of care for people with rare autoimmune rheumatic diseases #RAIRDAware

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

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

We were delighted to hear @Peter_Dowd raising the importance of working together to ensure people with RAIRDs are not left behind. #RAIRDAware

Jim Shannon MP has tabled a Westminster Hall debate to raise awareness of RAIRDs, at 9.30am on Tuesday 10th December. If you would like to email your MP, to ask them to get involved with the debate, please see RAIRDA's template email below! https://rairda.org/get-involved/debate/

Have you seen our latest website post? It's important to protect yourself against #COVID-19. Visit our website to find out more about the NHS Autumn 2024 COVID-19 booster programme, and why it is important for people with RAIRDs to receive their...

#BePartOfTheAnswer and take part on a first of its kind ‘citizen science’ study to raise awareness and gather information on Raynaud’s and related auto-immune conditions. Complete @WeAreSRUK 60 seconds survey today by following this link...

Take 60 secs to take @WeAreSRUK's online Raynaud's symptom test. See if you could have Raynaud's and #BePartOfTheAnswer in helping unlock potential breakthroughs in diagnosis and treatment for debilitating autoimmune conditions like scleroderma. http://www.sruk.co.uk/testme