Lumiio

04/15/2026

Most AI systems treat governance as a compliance exercise. Something you document, tick off, and move on from.

We're building things differently.

At Lumiio, governance, transparency, and patient agency are not boxes to check, they are design requirements. Because in rare disease, where communities are small, trust is hard won, and participation is everything, an AI system that does not put patients at the centre will not work. Not ethically, and not practically.

Mel Hayes and Dr. Lawrence Korngut from our team have written about exactly this. What patient-governed AI actually looks like. Why trust is the infrastructure, not a feature. And what it means to build a system where patients are genuine partners in how their data is used.

If you work in rare disease, health AI, or patient advocacy, this one is worth your time.

Read it here: https://www.lumiio.com/news-research/patient-governed-ai-the-trust-infrastructure-rare-disease-will-need-next/

International FOP Association (IFOPA) Inflamed Brain Alliance MitoCanada FSHD Society

By Mel Hayes and Dr. Lawrence Korngut. With contributions from Victoria Hodgkinson, PhD, Blaine Penny, and Ken Kahtava. What This Article Argues In rare disease, the biggest risk in AI is not that it will have a lack of data to provide insights — it is whether those insights can be trusted. As AI ...

02/28/2026

Today is . 🦓

300 million people worldwide live with a . Yet for most of them, the journey to diagnosis takes years, sometimes decades. And for many, a treatment never comes.

We want to pause and recognize the organizations that refuse to accept that reality - the patient advocacy groups, rare disease foundations, researchers, and caregivers who show up every single day for communities that are too often invisible to the broader healthcare system. You are the reason progress happens.

At Lumiio, we believe that rare shouldn't mean forgotten, and we believe technology, data, AI and community have a real role to play in changing that. From cutting through diagnostic odysseys to connecting patients with the right support faster than ever before, the potential is enormous, but so is the responsibility to get it right.

So we want to hear from you:

👉 Where do you think AI could make the biggest near-term difference in rare diseases - shortening time to diagnosis, improving care coordination, accelerating research and clinical trials, or expanding patient support - and why?

Drop your thoughts in the comments. Every perspective matters, and it's exactly what drives us.

Inflamed Brain Alliance MitoCanada ALS Canada FSHD Society International FOP Association (IFOPA)