Privacy Policy
We collect as little as we can, explain why, and never sell your data or share it with funders.
Last updated: [date] · Draft for legal review before launch
Who we are
CSU – Chronic Urticaria Support Group ("CSU", "we") is a non-commercial patient platform based in New Delhi, India. We are the Data Fiduciary for personal data collected through this website, our CSU Care Kiosks and our community groups, under India's Digital Personal Data Protection Act, 2023.
What we collect
- When you join or register: name, mobile number, email, city, preferred language, and whether you are a patient, caregiver or professional.
- Kiosk sign-ups: the same details plus the clinic code printed on the kiosk, so we know which clinic you came from.
- Messages you send us: whatever you choose to write. Please don't send medical records.
- Website use: anonymous analytics such as pages visited, downloads and time on site, using cookies only if you allow them.
The UAS7 tracker and appointment checklist save only in your own browser. We cannot see them.
Why we use it
- To send you what you asked for: guides, event links, WhatsApp updates.
- To run and moderate peer support groups.
- To understand, in aggregate, how many people our programmes reach — for example, the number of downloads or kiosk sign-ups per city. These reports never identify you.
Who we share it with
We do not sell your data. We do not share identifiable data with clinics, hospitals or the organisations that fund our awareness work. We use trusted service providers (website hosting, email and WhatsApp messaging, analytics) who process data only on our instructions. If you report a side effect of a medicine, we may be legally required to pass the safety information to the medicine's maker and/or the Pharmacovigilance Programme of India — without your contact details unless you agree.
Your rights
You can ask to see, correct or delete your data, withdraw consent, or leave any group at any time by writing to privacy@csu.pairacademy.org. Grievance Officer: [name, email]. We respond within 30 days.
How long we keep it
We keep contact details while you are part of the community and delete them within 12 months after you leave or withdraw consent, unless the law requires longer.
Children
Our groups are for adults. Parents and guardians may join on behalf of a child.