iiinova — where your digital self keeps evolving

Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 03/03/2026

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.

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RAIRDA @rairda.bsky.social · 04/03/2026

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...

rairda.org

NICE quality standard for rare disease – publication

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.

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RAIRDA @rairda.bsky.social · 27/02/2026

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

nice.org.uk

Overview | Rare diseases | Quality standards | NICE

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RAIRDA @rairda.bsky.social · 19/02/2026

We're on Linkedin! For all the latest from RAIRDA and our member charities, give us a follow➡️ www.linkedin.com/company/1113...

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Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 18/02/2026

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: bit.ly/4kGWAQF 💜

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RAIRDA @rairda.bsky.social · 17/11/2025

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.

surveymonkey.com

Health information, PIF TICK and rare disease survey

Take this survey powered by surveymonkey.com. Create your own surveys for free.

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RAIRDA @rairda.bsky.social · 28/10/2025

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.

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RAIRDA @rairda.bsky.social · 14/08/2025

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.

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RAIRDA @rairda.bsky.social · 07/08/2025

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

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RAIRDA @rairda.bsky.social · 05/08/2025

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

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RAIRDA @rairda.bsky.social · 01/08/2025

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

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RAIRDA @rairda.bsky.social · 29/07/2025

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...

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Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 18/07/2025

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

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RAIRDA @rairda.bsky.social · 23/07/2025

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

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RAIRDA @rairda.bsky.social · 08/07/2025

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

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Reposted by RAIRDA

The Lancet Rheumatology @thelancetrheum.bsky.social · 13/06/2025

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

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Reposted by RAIRDA

Lupus Europe @lupuseurope.bsky.social · 12/06/2025

🚨 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

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Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 10/05/2025

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

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RAIRDA @rairda.bsky.social · 19/06/2025

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

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RAIRDA @rairda.bsky.social · 12/06/2025

🔎 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

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RAIRDA @rairda.bsky.social · 15/05/2025

Today is #WorldVasculitisDay. Vasculitis is a rare autoimmune rheumatic condition. We're campaigning for improved care for everyone affected.

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Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 03/05/2025

One week to go until #WorldLupusDay! 🌏💜 Have you seen our official poster for 2025? You can order physical copies of our poster here: lupusuk.org.uk/order-awareness-supp… or download a pdf version here: lupusuk.org.uk/world-lupus-day-may-…

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RAIRDA @rairda.bsky.social · 02/05/2025

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/...

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RAIRDA @rairda.bsky.social · 01/05/2025

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

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RAIRDA @rairda.bsky.social · 30/04/2025

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/...

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RAIRDA @rairda.bsky.social · 30/04/2025

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/

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Reposted by RAIRDA

Lupus UK @lupusuk.bsky.social · 29/04/2025

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/

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RAIRDA @rairda.bsky.social · 29/04/2025

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

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RAIRDA @rairda.bsky.social · 29/04/2025

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/

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RAIRDA @rairda.bsky.social · 22/04/2025

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/

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RAIRDA @rairda.bsky.social · 15/04/2025

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

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RAIRDA @rairda.bsky.social · 10/04/2025

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

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RAIRDA @rairda.bsky.social · 03/04/2025

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

youtube.com

How to complete the second round of our Rare Disease Quality Statements survey

YouTube video by Rare Disease Quality Statements

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RAIRDA @rairda.bsky.social · 01/04/2025

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

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RAIRDA @rairda.bsky.social · 25/03/2025

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/

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RAIRDA @rairda.bsky.social · 20/03/2025

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

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RAIRDA @rairda.bsky.social · 12/03/2025

@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

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RAIRDA @rairda.bsky.social · 03/03/2025

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.

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RAIRDA @rairda.bsky.social · 28/02/2025

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

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RAIRDA @rairda.bsky.social · 28/02/2025

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

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RAIRDA @rairda.bsky.social · 28/02/2025

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.

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RAIRDA @rairda.bsky.social · 28/02/2025

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

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RAIRDA @rairda.bsky.social · 07/02/2025

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

bit.ly

Be Part of the Answer | SRUK

Be Part of The Answer - download the Raynaud's App or tak...

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RAIRDA @rairda.bsky.social · 24/01/2025

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/

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RAIRDA @rairda.bsky.social · 21/01/2025

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

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RAIRDA @rairda.bsky.social · 09/01/2025

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 ➡️ rairda.org/autumn-2024-covid-19-boo…

rairda.org

COVID-19 Seasonal Vaccination Programme: Autumn/winter 20...

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RAIRDA @rairda.bsky.social · 08/01/2025

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

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RAIRDA @rairda.bsky.social · 13/12/2024

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

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RAIRDA @rairda.bsky.social · 12/12/2024

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

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