UK patient charity

The side effects
that never stopped

For some people, hair-loss and antidepressant medicines leave sexual, physical, cognitive and emotional symptoms that never go away. It is called Post-Finasteride Syndrome and Post-SSRI Sexual Dysfunction, and we fund the research to end it.

490+ patients registered · 60 countries · PFS, PSSD & PAS
11,557 finasteride reports to FDA FAERS · 21,287 finasteride reports to WHO VigiBase from 153 countries · 2019 EMA recognised that SSRI sexual dysfunction may persist · 3,764 genes showed altered expression in PFS patients· 2021 Post-Finasteride Syndrome added as a MedDRA term· 94% of surveyed PFS patients report low libido· 490+ patients have joined the SIDEfxHUB registry· 11,557 finasteride reports to FDA FAERS · 21,287 finasteride reports to WHO VigiBase from 153 countries · 2019 EMA recognised that SSRI sexual dysfunction may persist · 3,764 genes showed altered expression in PFS patients· 2021 Post-Finasteride Syndrome added as a MedDRA term· 94% of surveyed PFS patients report low libido· 490+ patients have joined the SIDEfxHUB registry·

Our WhatsApp Peer Support Groups

Four small, private groups for people living with PFS and PSSD.

Belgium France Netherlands Italy

PFS/PSSD Group
Benelux, France & Italy

Denmark Sweden Norway

PFS/PSSD Group
Scandinavia

United Kingdom

PFS/PSSD Group
United Kingdom

United States Canada

PFS/PSSD Group
US & Canada

The groups are for people on our registry — we’ll show you how in a moment.

The Conditions

Three medicines.
The same story.

Finasteride for hair loss. Isotretinoin for acne. SSRIs for depression. Different drugs, one pattern — and for some people it does not end when the prescription does.

1

A routine prescription

Ordinary problems, ordinary drugs. Tens of millions of prescriptions a year.

2

Called rare and reversible

The labels said side effects were uncommon and would lift on stopping. Patients and doctors believed them.

3

They stopped. It didn’t.

Sexual, physical, cognitive, emotional. Still there years after the last dose.

4

Recognition is catching up

Now documented by the FDA and EMA. Still not taught in medical school — and closing that gap is our work.

21,287 finasteride reports to the WHO, from 153 countries 11,557 reports to the FDA’s own adverse event system
1–10% the share of adverse reactions the FDA estimates are ever reported at all

Post Finasteride Syndrome

Finasteride / Propecia

Prescribed for male pattern hair loss and enlarged prostate. A minority of patients report sexual, cognitive and emotional symptoms that persist after stopping the medication.

Learn more →

PSSD

SSRIs / Antidepressants

Among the world's most prescribed antidepressants. Some patients experience persistent sexual dysfunction and emotional blunting that continues after treatment ends.

Learn more →

Post-Accutane Syndrome

Isotretinoin / Accutane

Prescribed for severe acne. Some patients report sexual, cognitive and emotional symptoms that continue long after the course of treatment is completed.

Learn more →
The Milano Project

Where the answers
are coming from

At the University of Milan, Professor Roberto Melcangi’s team is uncovering the biology behind PFS and PSSD — the most thorough programme ever run on these conditions, and the closest anyone has come to a treatment.

“We are no longer in the dark. The evidence is strong — and the next step is human clinical trials.”

— Prof. Roberto Melcangi

About SIDEfxHUB

Welcome to SIDEfxHUB, a charity dedicated to improving the lives of those impacted by PSSD and PFS. We believe in the power of collective action and are committed to connecting communities to amplify their voices. Our mission is to provide a platform for shared fundraising, support credible research, and enhance patient support through various initiatives.

Join us in our efforts to make a meaningful difference. Whether through donating, participating in our registry, or staying informed with our updates, your involvement is invaluable in moving our cause forward.

Learn more about us →

Current Initiatives

WhatsApp Peer Support Groups

Join our peer support WhatsApp groups to connect with others who understand what you are going through. Whether you are dealing with PFS, PSSD, or other medication-related challenges, our supportive community is here to help. Share experiences, ask questions, and find comfort among peers. Join us on WhatsApp today.

PSSD & PFS Registry

The PSSD & PFS Registry links individuals with specific conditions to researchers conducting relevant studies. By joining, you aid in advancing medical research while ensuring your privacy and informed consent. Contribute to the development of new treatments by registering today. Join the registry.

Scientific Medical Research

We are committed to supporting those affected by PFS and PSSD, conditions caused by adverse medication effects. Our mission is to advance research and provide vital support. By working with leading researchers, we aim to find effective treatments and raise awareness. Your support is essential. Donate now.

PFS & PSSD Patient Registry

Join the Registry

Help build the world's largest patient database for PFS and PSSD. Your participation drives research and recognition.

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Patients registered
0
Countries represented
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Studies in progress

Why join?

Drive research forward

Your data directly supports the Milano Project and other research efforts.

Stay informed

Receive updates on research breakthroughs and community initiatives.

Show the true scale

Help researchers and regulators understand how many people these conditions affect worldwide.

"For years, I felt like my struggles were invisible. A united registry is the first step toward being truly seen."

— PSSD Patient, Germany

Join the registry

It takes about 3 minutes, and you can stay anonymous.

  • Open to anyone affected by PFS, PAS or PSSD
  • Stored securely, never shared without your consent
  • Remove your data at any time, no questions asked
Start registration →

Secure · GDPR-compliant · UK charity 1203385

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