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.
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rairda.org/nice-quality-s…

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

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.