Small charity. Serious research.
Whether you join the registry, donate to research or simply share what you know, you help bring recognition and support to patients affected by these conditions.
Register Your Experience
Every registration helps researchers and regulators understand how many people these conditions affect.
530+ patients have joined so far.
Join the registry →Fund Research
As a neutral charity, we pass donations directly to the Milano Project and other independent research.
Donate →Six ways to make a difference
Register your experience
Join the PSSD & PFS Registry. Every data point matters for research and regulatory action.
Share your experience
Only if you want to, and anonymously if you prefer. Hearing from others helps patients feel less alone and helps clinicians recognise these conditions.
Contact your representative
Write to your MP, senator or health authority and ask them to support better recognition of and research into persistent side effects.
Spread the word
Share our resources on social media. Talk to friends, family, and especially healthcare providers.
Donate to research
Fund the Milano Project and other independent studies. Every contribution drives real science.
Connect with others
Join our WhatsApp support groups. You are not alone — thousands worldwide share your experience.
Organisations supporting patients and research
These organisations fund research, support patients, and work for better recognition of these conditions.
SIDEfxHUB
UK Charity #1203385. Connecting communities, funding the Milano Project, running the patient registry.
UK Registered Charity Donate →PFS Foundation
Leading PFS research funding. Supports the Milano Project and works with regulatory bodies worldwide.
US 501(c)(3) Visit →PSSD Network
Advocating for PSSD recognition, funding research, and supporting affected patients globally.
Non-profit Visit →Writing or researching about these conditions?
We share referenced background material, research summaries and — where patients have given their consent — introductions to people willing to talk about their experience. All sources are cited and verifiable.