Privacy Policy
Effective date: 6 September 2026 | Version: PRIV 2.1
Who we are
SIDEfxHUB is a Charitable Incorporated Organisation (CIO) registered with the Charity Commission for England and Wales (charity number 1203385).
Website: sidefxhub.com | Email: contact@sidefxhub.com
What data we collect
Registry data: name or pseudonym, email, condition (PFS/PSSD/PAS), demographics (birth year, gender, country), symptom severity ratings, drug timeline, research participation preferences.
Contact form submissions: name, email, message content.
Event signups: name, email, country (optional), and which session you chose. Collected only when you sign up for a webinar or other event, and only with your explicit consent.
Analytics: only if you accept analytics cookies. We record the pages you visit, the site that sent you (the domain only, never the full address), the country your connection appears to be in, and your device and browser type. We also count a short list of actions — opening the reporting guide, following a link to the registry, starting a donation, playing a film, following the link to our WhatsApp groups, and which external site a link took you to (the domain only, never the page).
Our analytics are our own. There is no Google Analytics, no advertising network and no third-party tracker on this site; nothing is shared with anyone.
Your IP address is never stored. Our server uses it to work out the country and to block automated abuse, and then discards it.
Two cookies make this work, and both hold nothing but a random number:
sfx_vid— tells repeat visits apart. Expires after 12 months.sfx_sid— marks one visit. Expires after 30 minutes of inactivity.
Decline analytics, or withdraw later, and neither cookie is set — and any already on your device is deleted.
How we use your data
- Building a patient registry to support research and advocacy
- Sending updates about research, fundraising, and patient support
- Improving our website
- Responding to enquiries
We will never sell, trade or rent your personal data.
Legal basis (UK GDPR)
- Consent (Article 6(1)(a)): when you join our registry, subscribe to updates, or submit a contact form
- Consent (Article 6(1)(a), and PECR regulation 6 for the cookies themselves): analytics, and everything derived from it. Nothing is collected until you accept, and collection stops the moment you withdraw
- Legitimate interests (Article 6(1)(f)): improving services and outreach aligned with our charitable objectives
Data sharing
We do not share your personal data except:
- Research: with your separate, explicit consent if a relevant study arises
- Service providers: limited third-party services under data processing agreements
- Legal obligations: if required by law
Data retention
- Registry data: retained for the duration of your participation. Request deletion at any time.
- Contact submissions: retained for up to 24 months, then deleted.
- Event signups: deleted within one week of the event taking place.
- Analytics: individual visit records are deleted after 14 months. Counts and totals derived from them are kept, but they cannot be traced back to a visit or a device.
Your rights
You have the right to access, rectify, erase, port, restrict, and object to the processing of your data. You may withdraw consent at any time. Contact contact@sidefxhub.com — we will respond within one month.
For analytics specifically: we hold no name or email against it, so we can only find your records if you send us the value of your sfx_vid cookie (your browser’s developer tools will show it, under this site’s cookies). With it we can retrieve or delete everything recorded for your browser. If you have cleared your cookies we cannot identify you, and under Article 11 we are not required to — we would rather say so than promise otherwise.
Cookies
Analytics cookies only, and only with your consent. No advertising, no cross-site tracking, and no third-party analytics. You choose on your first visit, and you can change your mind at any time through the cookie settings link at the foot of any page.
Third-party services
- Stripe: processes donations securely. Payment details handled by Stripe, not stored on our servers.
- YouTube: embedded videos may set cookies.
- Zoom: hosts our live sessions. If you join one, Zoom processes your data under its own policy. Zoom is a US provider.
- Microsoft: delivers our outgoing email.
- Railway: hosts this website and our registry.
Security
We take reasonable measures to protect your data. No method of internet transmission is completely secure.
Contact us
Email: contact@sidefxhub.com | Organisation: SIDEfxHUB, UK Registered Charity #1203385
ICO: ico.org.uk | 0303 123 1113