UK patient charity · PFS, PSSD & PAS

Millions take these drugs.
Thousands are left with permanent disease.

  • Finasteride, antidepressants, isotretinoin.
  • They can cause life-altering, irreversible conditions.
  • We fight for recognition, and fund the research to end it.
The patient registry

550+ patients have joined the registry.
Join them.

  • Put your condition on the record
  • Be first to hear about studies you can join
  • Help researchers find patients like you
Join the registry
  • 3 minutes to sign up
  • Information never shared
Live 550+ patients counted so far Each dot is one patient 62countries 3conditions
Medical conference

PFS / PAS / PSSD Summit 2026

In April 2026, Dr. Kenneth Peters held the first medical conference on PFS, PAS and PSSD together. Urologists (doctors for the bladder and sex organs), researchers and patients were in the same room.

Read Dr. Peters' interview  ·  Read Dr. Powers' interview

The Milano project

From evidence to treatment

Professor Roberto Melcangi’s team in Milan is finding out what these drugs change in the body.

The next step is testing in people.

Help fund the next step

“We are no longer in the dark. The evidence is strong. Now we need to take the next step.”

Prof. Roberto Melcangi
University of Milan
Support

You do not have to work this out alone

Reporting a side effect+

How to report to the MHRA Yellow Card scheme, the FDA, or your own national regulator. And why your report matters.

How to report

WhatsApp peer support groups+

Four small, private groups for people living with PFS and PSSD. The groups are UK, Scandinavia, Benelux/France/Italy, and US/Canada. They are for people on our registry.

How to join

Patient support library+

Guides, ways to cope, and what to bring to an appointment. Written for PFS and PSSD.

Open the library

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Nothing here is medical advice

Do not stop a prescription without speaking to your prescriber. Stopping suddenly carries its own risks. If you are in crisis, the helplines at the foot of this page are answered any hour.

If you are in crisis: 116 123 Samaritans (UK)988 Lifeline (US)Find a helpline

Free live webinar

Webinar: learn how to report your side effects

A 45-minute live walkthrough on Zoom, free to join.

Times below are UK and US Eastern.