Privacy Policy
Effective date: 11 April 2026 | Version: PRIV 2.0
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: pages visited, referring source, browser type, approximate location (country level). No personally identifiable analytics data is retained.
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
- 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: aggregated and anonymised.
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.
Cookies
Analytics cookies only. No advertising or cross-site tracking. You can accept or decline on first visit.
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