The Challenge
Rare disease foundations serve a deeply specific audience: people who just received a diagnosis they've never heard of, whose first instinct is to search the internet and find almost nothing useful. The moment they land on a foundation site, they are frightened, exhausted, and often in shock.
Most nonprofit websites are built for donors and press. Luminary Foundation wanted the opposite: a platform built first for the families, with every design decision filtered through one question — what does someone need in the worst week of their life?
Designing for Overwhelm
The first decision was navigation. Most sites have 8–12 items in the header. Luminary Foundation has five: Newly Diagnosed, Research, Community, Remember, Get Help. Every label is plain English. Nothing is called "Programs" or "Initiatives" or "Resources." The words are what the person is thinking, not what an organization would write.
Color is muted and warm — no aggressive CTAs, no urgency signals. The page feels like a room that's been made quiet for you.
AI Resource Matcher
In the first days after a rare disease diagnosis, families face an avalanche of information: specialists to find, insurance to navigate, clinical trials to evaluate, support groups to locate. The AI resource matcher asks five gentle questions — diagnosis, child or adult, location, what's most urgent right now — and returns a personalized list of next steps.
Not a list of 200 links. A short, specific, ranked list of exactly what this family should do in the next 72 hours. Then the next week. Then the next month. The assistant speaks in plain language and never uses clinical jargon without immediately explaining it.
What the platform delivers
- Newly diagnosed families find relevant resources in under 60 seconds
- Research papers are summarized in plain language — no medical degree required
- Community forums connect families with shared diagnoses within hours of joining
- Bereavement section is accessible without navigating through 'positive' content
- AI resource matcher available at 3am — when search anxiety peaks
The Research Hub
Rare disease research moves fast but is published in inaccessible language behind paywalls. The research hub aggregates published studies and runs each through an AI summarizer that produces a plain-language brief: what was studied, what they found, what it might mean for patients.
Families can follow specific research threads, receive email updates when new studies are summarized, and share findings with their medical team. For many families, this is the first time they've been able to stay current with research about their child's condition.
Virtual Memorial
Luminary Foundation serves families who have lost someone. The memorial section is one of the most carefully designed parts of the platform.
Each person remembered has their own page — a photo, a short biography, and a candle that visitors can light. Candles remain lit. There are no ads, no donation asks, no navigation to other sections. The page is a quiet room.
Families who set up a memorial page receive a private link they can share. The candle lighting feature gives distant family members and friends a way to participate in remembrance across geography and time zones.
Built with
The Community
The community section connects families by diagnosis. A family with a newly diagnosed child can find another family three years into the same journey and ask real questions — not "is this normal" in a general Facebook group, but specific questions to people who have lived exactly this experience.
Moderation is light and human. The community is not a product feature — it is the foundation's most valuable asset.
"The navigation alone changed everything. We used to get calls from parents saying they couldn't find what they needed. Since the redesign, those calls stopped. They find it themselves, at midnight, when they need it most.