Around 6% of people in the UK live with a rare disease. Although individually uncommon, together they affect millions of families. Many spend years searching for answers. KLEOS™ My Rare Journey aims to ensure those experiences lead to practical change.
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. The responses are converted into structured, anonymised insights that help improve understanding of how rare diseases present in real life.
Insights gathered will also inform the development of KLEOS™ Clinical Flags, OpalMedica’s patent-pending Class I medical device in development 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 means patients are more likely to be heard in primary care.” Founder statement “Launching KLEOS™ My Rare Journey is deeply personal,” said Sara Elgott, Founder of OpalMedica. “My late mum was treated for the wrong disease for years 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.”
How to take part:
People living with a confirmed rare disease can share their experience at: www.myrarejourney.com
Every voice counts. Every story shapes the future.
