Our peer support groups
Small, regional and private — for people who know what this is like from the inside.
Our groups are quiet places. People bring difficult days to them — the appointment that went badly, the symptom that came back, the morning it all felt like too much. That only works if everyone in the room is who they say they are.
So the groups are for members of the SIDEfxHUB registry. It is not a hoop for its own sake: it means every person in the group is someone we hold a record for, and that is what makes the space safe enough to be honest in.
Worth joining on its own
The registry is the backbone of everything we do. It is how researchers like Professor Melcangi's team in Milan get the data their studies depend on, and it is how the true scale of PFS, PAS and PSSD becomes visible to the FDA and the EMA. Most people join for that reason alone and never ask about a group.
Everyone who joins is emailed a link to the groups straight away. Already a member and the email is long gone? We will send you another.
Three steps
Join the registry
About three minutes, and you can use a pseudonym. Your link to the groups is emailed to you as soon as you are done.
Open the link and pick your group
The page lists all four. Choose the one that fits you — you can come back later and join another.
An admin lets you in
Tapping a group sends a request to join. One of that group's admins accepts it by hand, so there may be a short wait — it is a person, not a queue-jumping algorithm.
Why it works this way. The invite links are no longer published on this site, because anything printed on a public page stays public — in caches and archives — for good. Now they only reach people we have a registry record for, and a human admin still approves every request inside WhatsApp.
Our WhatsApp peer support groups
Four small, private groups for people living with PFS and PSSD.
PFS/PSSD Group
Benelux, France & Italy
PFS/PSSD Group
Scandinavia
PFS/PSSD Group
United Kingdom
PFS/PSSD Group
US & Canada
The groups are for people on our registry — we’ll show you how in a moment.
You still have somewhere to go
Group admins occasionally decline a request — usually geography, because these groups only work when people share a time zone and a language. That is never a judgement about you, and it changes nothing about your place on the registry. Email us and we will help you find the right group; our written resources are open to everyone regardless.