About Us
Understanding rare disease starts with listening.
My Rare Journey is developed by OpalMedica, a medical technology company focused on rare diseases. We build tools that support earlier detection of rare diseases and develop registries to facilitate rare disease research.
Our innovation includes OpalMedica Clinical Flags, a patent pending Class I medical device designed to support general practitioners (GPs) and family physicians in recognising symptom patterns that may indicate a rare disease.
The My Rare Journey platform exists because lived experience is often missing from the data that shapes research and innovation. By contributing your story, you help ensure that rare disease research and diagnostic innovations reflect real journeys.
My Rare Journey is not a diagnostic tool and does not provide medical advice. If you are concerned about your health or symptoms, please speak to your healthcare professional.
Our mission
Giving rare disease patients a voice in research
For most rare disease patients, the path to diagnosis is long, isolating, and largely invisible to the healthcare system. Years of uncertainty, misdiagnosis, and repeated specialist visits leave patients exhausted, and the data from those journeys is lost.
My Rare Journey exists to change that. By giving patients a structured way to document their diagnostic experience, we create research-grade datasets that help researchers, clinicians, and pharmaceutical partners understand what patients actually go through, and where the system can do better.
7,000+
Known rare diseases
The vast majority have no approved treatment. Understanding diagnostic journeys is the first step toward changing that.
1 in 17
People affected by a rare disease
An estimated 3.5 million people in the UK live with a rare condition, far more common than most realise.
5+ years
Average time to diagnosis
Years of uncertainty, misdiagnosis, and specialist referrals before patients receive a correct diagnosis.
Our values
What guides everything we build
Every decision we make is measured against these principles, from the code we write to the partnerships we form.
Privacy by Design
Data protection isn't an afterthought. It's embedded in every architectural decision, from pseudonymous identities to UK-hosted infrastructure.
Patient Ownership
Your data belongs to you. Granular consent controls, full export capability, and the right to deletion. Always.
Research Integrity
Structured, versioned surveys designed with clinical researchers. Every dataset is traceable, reproducible, and ethically sourced.
Accessibility
Rare disease patients face enough barriers. Our platform is designed to be usable by everyone, regardless of ability or technical confidence.
Transparency
Clear communication about how data is used, who sees it, and why. No dark patterns, no hidden monetisation, no surprises.
Community First
Moderated, safe spaces where patients and families can connect, share, and support one another, on their own terms.
The company
The team behind My Rare Journey
OpalMedica is a UK-based health technology company focused on building ethical, privacy-first platforms for patient engagement and real-world evidence generation. We work at the intersection of patient experience and data science, creating tools that give patients agency over their own health narratives.
Our team brings together expertise in clinical research, software engineering, data protection, and patient advocacy. We believe that the best health technology is built with patients, not just for them, and that trust is earned through transparency, not terms and conditions.
Ready to share your journey?
Join a growing community of rare disease patients turning their experiences into insights that drive better outcomes.