UK patient charity · PFS, PSSD & PAS

The side effects that never stopped

  • Hair-loss, antidepressant and acne drugs, taken by millions.
  • For some people the side effects never stop, long after the last dose.
  • We fund the research to end them. We fight to get them recognised.
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
PFS & PSSD patient registry

Help build the evidence

The registry turns single stories into numbers that researchers and regulators can use. It takes about 3 minutes. You can stay anonymous.

Start registration →
540 Patients registered live from the registry
62 Countries represented
7 Studies in progress
Support

You do not have to work this out alone

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

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

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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