RAIRDA

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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-s…

ADAPT fatigue #Research study - rare #autoimmune #rheumatic conditions @RAIRDA_org

If you live in the UK and have a rare condition, please take part and share. Together, we can drive better support at work. 🔗 forms.office.com/e/dwgBKrBPYh #RareDisease #WorkAndHealth

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 our involvement here ➡️ rairda.org/nice-quality-s…

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 @NICEComms Quality Standard for Rare Disease.  This quality standard marks the first developed collaboratively between NICE and the patient community nice.org.uk/guidance/qs214

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

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'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.

From unexplained symptoms and dismissed concerns to a diagnosis that reshaped everything, Jill’s journey with Sjögren’s is one of resilience, creativity, and quiet strength. Read Jill’s full story on the Patient Stories page of our website #sjogrens #sjogrensuk #sjögrens

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.

Thank you to @JamesEvansMS 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 ➡️shorturl.at/QRvAy

We thank @JimShannonMP 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.

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. 🔗 tinyurl.com/RAISE2025 #RAIRDA #RAREdisease #PatientVoice

Improving quality of life and empowering everyone with greater knowledge and support are crucial themes in our Rare Care Matters report. Implementing RAIRDA's recommendations is key to improving care for patients with RAIRDs. Click here to learn more➡️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-matt…