OpalMedica launches patient platform to help shape the future of rare disease detection
Manchester, UK – 28 February 2026 – Medical technology company OpalMedica has launched KLEOS™ My Rare Journey, a new patient platform inviting people living with rare diseases to share their diagnostic experiences and help inform future approaches to detection and research.
Around 6% of people in the UK live with a rare disease. Although individually uncommon, together they affect millions of families. For many, the journey to diagnosis takes years. KLEOS™ My Rare Journey aims to ensure those experiences contribute to a better understanding of how rare diseases present in real life.
The free platform, available internationally to patients and patient organisations, allows people with confirmed diagnoses to complete a secure online survey describing their route to diagnosis. Responses are converted into structured, anonymised insights handled within a strict governance framework, supporting research and understanding of rare disease presentation.
Insights gathered will also inform the ongoing development of KLEOS™ Clinical Flags, OpalMedica’s patent-pending platform progressing through the Class I medical device regulatory and development pathway, designed to support earlier detection of rare diseases in primary care.
Developed with the rare disease community
Ahead of launch, OpalMedica worked with patient advocacy groups through a co-creation workshop to help shape the platform and ensure it reflects real patient priorities.
A spokesperson from The Association for Multiple Endocrine Neoplasia Disorders (AMEND) said:
“This is an exciting initiative that could bring real benefit to patients with rare diseases. For years we have called for tools to help GPs detect symptoms earlier. Using real patient experiences to inform clinical decision-making has the potential to mean patients are more likely to be heard in primary care.”
Founder statement
“Launching KLEOS™ My Rare Journey is deeply personal. My mum spent years being treated for the wrong condition and only received the correct diagnosis the day before she passed away. I wanted to create something where patient experiences could help others reach answers sooner.” – Sara Elgott, Founder of OpalMedica
How to take part
People living with a confirmed rare disease can join the KLEOS™ community and complete the survey at: www.myrarejourney.com
Campaign line: Every voice counts. Every story shapes the future.
Media contact:
Sara Elgott
Founder
OpalMedica
+44 (0)161 553 1749
