Built by patients, for patients.
SIDEfxHUB is a UK-registered charity working for better recognition, research and support for people living with PFS, PSSD and PAS.
Why we started
Every one of us came to this the same way — through our own experience, or someone we love.
“Patients deserve proper legal protection and someone who fights for their rights.”
Gary Shields
Legal & Compliance Director
gary@sidefxhub.com
“These conditions are real. I'm here to make sure the world hears our story.”
Robb Dixon
Communications Director
robb@sidefxhub.com
“Technology can amplify patient voices in ways that were never possible before.”
Morten Skov
Digital & Awareness Director
morten@sidefxhub.com
“No one should have to go through this alone. Community is everything.”
Ryan Clark
Community Director
ryan@sidefxhub.comWhat we have achieved together
From patients to advocates
Founded
SIDEfxHUB registered as a UK charity (No. 1203385), created by patients who saw the need for a unified voice.
Community built
Launched support groups, patient registry, and connected patients across 60+ countries.
Research & awareness
Backed the Milano Project and brought PFS to mainstream media — including ITV's Good Morning Britain.
This is where you come in
We need more people to grow our impact. Every volunteer multiplies what we can achieve.
What drives everything we do
Patient-first. Always.
Every decision is made with patients in mind. No pharmaceutical influence. No corporate agenda. Just people helping people.
Evidence-driven action
We ground everything in science. Our advocacy is backed by peer-reviewed research, regulatory data, and real patient experiences.
Stronger together
Isolation is the biggest enemy. We build connections across borders because patients united are patients heard.
Get in touch
Whether you want to volunteer, have questions, or just want to say hello — drop us a message. We reply to every single one.
