Built by patients, for patients.
SIDEfxHUB is a UK charity for people living with PFS, PSSD and PAS. We fund research, push for these conditions to be recognised, and support patients.
Leadership
The people who run SIDEfxHUB's research, communications and community work. You can email any of them directly.
What we have achieved together
From patients to campaigners
Founded
Set up by patients who wanted one clear voice. UK charity number 1203385.
Community built
Started the support groups and the patient registry. It now connects patients in 60+ countries.
Research & awareness
Backed the Milano Project. Took PFS into the mainstream media, including ITV's Good Morning Britain.
This is where you come in
We need more people. Every volunteer helps us do more.
What drives everything we do
Patient-first. Always.
Every decision is made with patients in mind. No drug-company influence. No corporate agenda. Just people helping people.
We follow the evidence
Everything we say is backed by research, data from regulators, and real patient stories. The research is peer-reviewed, which means other scientists have checked it.
Stronger together
Being alone is the biggest enemy. We connect patients across borders, because patients together get heard.
570+ people have joined the registry.
Join them, then report your side effects.
- Put your condition on the record
- Be first to hear about studies you can join
- Then report your side effects to your regulator