The Silence Is Not Absence

The jar

There is a number that keeps coming up in online communities. Ninety percent.

Ninety percent of members never post. Nine percent contribute occasionally. One percent create nearly everything everyone else reads. Usability researchers call it participation inequality, or the 90-9-1 rule, and it has been documented for decades across every kind of forum, group, and comment thread that exists.

In most contexts, this is an interesting footnote. In rare disease, it means the majority of patients are never in the room.

The math of who gets heard

The goal of patient-centered drug development — from early research through marketing and distribution — is to understand the patient voice. Everyone in this industry knows that. The challenge is that the rare disease population is, by definition, small and geographically dispersed. They are often managing mobility loss, movement disorders, or profound fatigue. Many face real financial pressure from reduced ability to work. Traditional mechanisms for capturing their experience — clinical trials, advisory boards, panels, long surveys — require showing up. Physically or digitally. Repeatedly.

The people who can do that are not a random sample. They are the most resourced, the most mobile, the least sick. The picture of the patient experience that reaches industry is systematically skewed — not because anyone intended it, but because the mechanisms we use to listen favor the people who have the energy to be found.

Where they actually go

Rare disease patients are among the most active health information seekers online — by necessity. After years of misdiagnosis and encounters with doctors who have never seen their condition, they have learned to find things themselves. They show up to brand sites, foundation pages, and registry sites for education. They watch MOA videos. They read patient stories. They appreciate it.

And then they leave and go to Facebook groups and Reddit threads.

Not because industry content is bad. Because it's one-directional. What they're looking for — and what no brand site offers — is the unremarkable afternoon. The thing you'd text one person. The experience that doesn't have a name but that ninety percent of people with your condition recognize the moment they read it.

So they go to the communities. And this is where the 90-9-1 rule matters most.

Walk into any rare disease Facebook group. 1,245 members. 4 people posting. Last post 2/15/2022. The voices that dominate tend to cluster at the emotional extremes: the devastated and the warriors. Both are real. Neither is the whole picture. And the vast majority of members — the ones who don't see themselves in either light — read quietly, feel like they don't belong, and eventually stop coming back.

The community that was supposed to make them feel less alone ends up being one more place where they don't fit.

What And Scene is

And Scene is a light engagement layer that lives on patient-facing websites — brand sites, foundation pages, registry sites — the places people with rare disease already visit. It is not a forum. Not a social feed. It requires no login, no username, no public word of any kind.

It has two pieces.

Moments are short, plain-language scenes — the way you'd describe your afternoon to someone who already gets it. Not the diagnosis day. Not the triumphant remission. A day in between. The jar you couldn't open. The meeting you sat through. The invitation still sitting on the counter. Each Moment is tuned to a specific condition and a specific stage of the patient journey. And Scene writes and cycles them so that any disease site can carry content that actually reflects what patients' lives look like.

Signals are small, optional, anonymous polls beneath each Moment. Me too. This has been my life for years. Not me, but I see you. That's it. Private, frictionless, and designed to match exactly how the quiet majority already behaves online — mostly reading, occasionally clicking, never performing.

For brands and organizations, And Scene brings genuine emotional resonance to pages that are currently all information and no recognition. It requires nothing from your IT team and collects no identifiable data. For patients, it offers something that has been missing from every official channel they've ever visited: the feeling that someone understands what their actual life looks like — without asking anything in return.

Why I'm building this

I came to rare disease as an outsider — and anyone in this space can smell that. But I couldn't look away. From the science. From the mothers building biotech companies in a race against time to save their children. From the patients who stand at a microphone at these conferences and describe what it cost them to get a diagnosis.

These people.

And I looked at what existed to connect them to the companies trying to help them — and I saw a gap that was simpler to fill than anyone had stopped to notice. Something small enough to fit inside the constraints of a regulated industry. Something that didn't ask patients to do anything they weren't already doing. I knew how to build it. So I did.

What's missing in this space isn't effort or empathy. There is an extraordinary amount of both. What's missing is a mechanism. A way to hear from the people who will never raise their hand.

And Scene is that mechanism. It doesn't try to turn quiet patients into vocal ones. It meets them where they are and asks almost nothing. A click, if they feel like it. Recognition, either way.

The silence is not absence. It is the sound of the majority.