Note for the team: Draft for review by the trustees and a legal adviser, including against the Digital Personal Data Protection Act, 2023. Final wording depends on how registrations and contact forms will be handled.
Cure SMA Foundation of India (“Cure SMA India”, “we”, “us”) respects your privacy. This policy explains what personal information we collect through this website and our programmes, how we use it, and the choices you have.
We never sell, rent or trade your personal information. We maintain full confidentiality of the families we support and of our donors, and we honour opt-out requests.
Information we collect
- When you contact us — your name, email address, phone number and message.
- When you register with us — details of the person with SMA (name, date of birth, gender, location, SMA type), parent or guardian contact details, and a copy of the genetic test report. This includes health information, which we treat as especially sensitive.
- When you donate — your name, contact details, PAN, address and donation details, so we can issue receipts under Section 80G. Card and bank payments are processed by our payment provider (Razorpay); we do not see or store your card details.
- When you volunteer or attend events — the details you give us for that purpose.
How we use it
- To provide support, counselling, clinics and other programmes to people with SMA and their families
- To keep registered members informed about treatment access, clinics, events and research
- To process donations and issue tax receipts
- To respond to your questions
- To advocate for the SMA community — using anonymised, aggregated information only (for example, the number of registered patients by state). We never share identifiable health information for advocacy without your explicit consent.
Who we share it with
We share information only:
- with service providers who help us run our work (for example, payment processing or email), who may use it only on our behalf;
- with doctors or hospitals, only with your consent, when you ask us to help arrange care;
- where required by law.
Website analytics and cookies
This website does not use advertising or tracking cookies. We use privacy-friendly analytics (Cloudflare Web Analytics) that counts visits without cookies and without identifying you.
Keeping your information safe
Access to personal information is limited to designated team members who need it. We use reasonable technical and organisational safeguards. No method of transmission over the internet is completely secure, but we work hard to protect your information.
Your rights
You can ask us to access, correct or delete your personal information, to withdraw your consent, or to stop sending you communications. Write to info@curesmaindia.org.
Children
Information about children with SMA is provided by, and with the consent of, a parent or guardian.
Changes
We may update this policy from time to time. The date at the top of the page shows when it was last reviewed.
Contact
Cure SMA Foundation of India #501, Tower D-23, IREO Victory Valley, Sector 67, Golf Course Extension Road, Gurugram, Haryana 122101 info@curesmaindia.org · +91 78785 51885