Small on purpose: running a group for a rare condition

Most advice about growing a community assumes there are thousands of potential members out there and your job is to reach them. For a rare condition, that simply isn't true. One of the rare-condition groups I help moderate has forty-three members across eleven countries, and that is most of the English-speaking adults with that diagnosis who are online at all. Growth isn't the goal. Staying findable and staying alive is.

Expect a slow, quiet rhythm

A small group can go a week without a new post, and that's fine. What matters is that when someone does post, especially someone newly diagnosed, they get a reply within a day. We keep a short rota of four members who have agreed to check in daily, so nobody posts into silence.

Spread the moderators across time zones

With members from New Zealand to Canada, someone is always awake and someone is always asleep. We stagger moderators across time zones instead of letting one person carry the night, and the pinned post says honestly that replies can take a while.

Protect people who are easy to identify

• When so few people share a diagnosis, a first name, a city and a hospital can be enough to identify someone. We ask members to leave out at least one of those.
• Keep the group closed to non-members, even though it makes you harder to find.
• Be careful with photos of letters, scans and medication boxes, which often carry more detail than people notice.

Plan for the group to outlive its founders

Small groups often rest on one devoted person, and if they burn out or get unwell, the group can vanish with them. Make sure at least two people have admin access, keep a short handover note, and save the important pinned posts somewhere outside the group.

If you run a group for a rare condition, I'd like to compare notes, especially on how new members find you in the first place.