Find the few others
who have it too.
Scattered Light helps adults with a rare condition find the few other people in the world who share it. A volunteer steward meets you on a video call, then invites you into that condition’s constellation: a small, private group where you won’t have to explain it from the beginning.
Free, and paid for by donations. Nobody pays to be introduced.
Key to the plate
- A member. Said yes to the constellation.
- A steward, who vouches for newcomers.
- An introduction. Both said yes, and a steward drew the line.
- The newest introduction, drawn warm.
This is the constellation for Harrow–Vance syndrome (invented for this example). Names are visible only to members, and positions are composition, never places.
What this is
What we are, and what we aren’t
We are
- A way to find each other. For adults with a rare condition, across countries and languages, when there may be only a handful of you in each country.
- One small constellation per condition. Each is an invite-only group. Nobody can browse it, search for it or stumble into it.
- Stewards. Volunteer peers, not clinicians. A steward meets each newcomer on a video call and vouches for them.
- Free. Paid for by donations. Nobody pays to be introduced, and nobody is paid to introduce.
We aren’t
- A clinic. We give no medical advice, we don’t discuss treatments, and we don’t describe conditions.
- A shop or a study. Nothing is sold here, and we never recruit members for research or pass them on to anyone who does.
- A directory or a forum. Nobody outside a constellation can see who is in it.
- A place strangers can write to you. Inside a constellation, nobody writes first until you have both said you would like to hear from each other.
How it works
How finding a steward works
Five steps, at your pace. You can stop after any of them, and nothing happens without your yes.
I Find a steward
Our stewards are listed publicly, so anyone can find one to write to. The list is a Kindling Pool of its own, and it is the only Pool we publish (§3.2, §8.3).
II Write to them
Stewards take a first message from anyone with a verified email address (§7.1). You don’t need to name your diagnosis in writing.
III A video call
At a time that suits you. The steward listens, answers your questions about how the constellation works, and tells you how many people are in it, never who. We never ask for medical records.
IV An invitation to you alone
If it feels right to you both, the steward vouches for you in that one constellation (§4.4). Its address reaches you from the steward and from nowhere else (§8.2). The invitation waits 14 days for your yes or no (§5.2).
V Nobody writes first
Inside, two members write to each other only after both have said they would like to (§7.2). You can leave in one step, any time, and it takes effect within sixty seconds (§5.3).
See it from the inside: The Heron, as a member sees it, and an invitation and an introduction.
Plate II · Scattered Light Stewards · a public Pool
Write to a steward
Our stewards are the one list anyone can see. Any of them will write back, and none of them will ask you to prove anything.
“Volunteer stewards who meet newcomers on a video call and vouch for them into a constellation. Stewards are peers, not clinicians, and give no medical advice. Listed publicly so anyone can find a steward to write to.”
- Curated by
- Inés CallowaySigned in with OAuthClare WhitfordSigned in with OAuth
- Visibility
- Public. Listed in our well-known file, so anyone can find it (§8.3).
- Consent
- Curator-only-adds: only a curator can propose a steward, and each steward still said yes (§5.4).
- Manifest
- pools/stewards.json
Inés CallowaySigned in with OAuth
Steward at Scattered Light. Spent eleven years looking for one other person with her diagnosis. Now vouches for newcomers after a video call.
- Page
ines-calloway.notion.example- Said yes
- January 15, 2026
- Messages
- Takes a first message from anyone with a verified email address.
- Kindling identity
- ines@mail.example
Clare WhitfordSigned in with OAuth
Steward. Keeps the group’s shared notes on which questions to bring to appointments.
- Page
clare-whitford.notion.example- Said yes
- January 16, 2026
- Messages
- Takes a first message from anyone with a verified email address.
- Kindling identity
- clare@mail.example
Noah FeldSigned in with OAuth
Steward. Trains new stewards in how to vouch without prying.
- Page
noah-feld.carrd.example- Said yes
- March 2, 2026
- Messages
- Takes a first message from anyone with a verified email address.
- Kindling identity
- noah@mail.example
Write to the stewards
Or write to stewards@scatteredlight.example.
Privacy
Why the stars have no names here
The plate at the top is a real constellation, drawn the way members see it, with the names taken off. Names are visible only to members.
Each constellation is an invite-only Pool. It is in no public list: not in our own well-known file, and not in any registry. Its address travels only from a steward to a newcomer (§3.2, §8.2).
We don’t use Kindling’s noindex setting to keep members private. It means “include me in no Pool at all”, so it would keep people out of their own constellation (§2.7). Privacy inside comes from who can see the Pool and who may write to whom.
No photo is stored. If a member’s own page has one, a Pool may keep its address and nothing else (§2.5), and our pages show a star instead.
Money
Where the money comes from
Scattered Light is a nonprofit, and every introduction is free. Our money comes from donations, most of it small monthly gifts from members, their families and their friends.
What donations pay for
- Hosting for our Pool files.
- Video-call accounts for stewards.
- Training for new stewards.
What we never take money for
- Introductions. Nobody pays to be introduced.
- Advertising, or data. We sell and share nothing about anyone.
- Access to members. We take no money from companies that make or sell treatments, tests or devices.
To give
Write to stewards@scatteredlight.example. We send a receipt, and nothing else.
Stewards are volunteers. Nobody at Scattered Light is paid by the introduction.