Privacy Policy

Last updated: 1 June 2026

This policy applies to Muskaan Care Trust ("we", "us", "our"), a registered charitable trust in Aotearoa New Zealand, and to all of our services, including this website, our peer support community, our helpline, and our in-person services.

1. Who we are

Muskaan Care Trust is a registered charitable trust (Charities Services # 51234). We provide support, advocacy, and education for people living with thalassaemia, sickle cell, and other adversity across Aotearoa.

For the purposes of the Privacy Act 2020, we are an "agency" and are responsible for the personal information we collect.

2. What we collect

We may collect the following kinds of personal information:

• Identity information: name, preferred pronouns, date of birth, ethnicity
• Contact information: phone, email, postal address, region
• Health information: condition, diagnosis status, treatment context (only if you choose to share)
• Whānau information: family relationship to a person with the condition
• Donation information: payment details (processed by Stripe, we never store card numbers)
• Volunteer information: skills, availability, references
• Website usage: IP address, pages viewed, device type, referrer (via standard analytics)

We collect only what we need to provide the service you've asked for.

3. How we use it

We use your information to:

• Provide the support, services, or community access you've requested
• Connect you with peer mentors or relevant resources
• Send you updates you've subscribed to
• Process donations and issue tax receipts
• Improve our services based on aggregate, de-identified analytics
• Comply with our legal obligations (e.g., charity reporting)

4. Sharing your information

We do not sell your data. Ever. We share it only with:

• Service providers (e.g., email platform, payment processor), bound by their own privacy obligations
• Health professionals only with your explicit consent and only when you've asked us to coordinate care
• Government agencies only when required by law (e.g., reporting suspected harm)

If you join our peer support community, your name and what you share is visible to other members, only. We never publish member content externally without consent.

5. Storage & security

Your data is stored in secure cloud services hosted in Australia and New Zealand. We use industry-standard encryption (TLS 1.3 in transit, AES-256 at rest), multi-factor authentication on all admin accounts, and minimum-necessary access controls.

We retain personal information only as long as needed: 7 years for donation records (tax law), 3 years for general enquiries, and indefinitely for peer community membership unless you ask us to delete it.

6. Your rights

Under the Privacy Act 2020 you have the right to:

• Access the personal information we hold about you
• Correct any information that's wrong or out of date
• Withdraw consent for any optional use of your information
• Be forgotten, request deletion of your data (subject to legal retention)
• Opt out of marketing communications at any time

To exercise any of these rights, email tascanz@muskaancaretrust.org.nz, we'll respond within 20 working days.

7. Cookies

This website uses minimal cookies. We use a single analytics cookie (or equivalent) to understand which pages are most useful, never to identify individual visitors. You can disable cookies in your browser settings; the site will still work fully.

8. Children's privacy

We provide services to children with thalassaemia and sickle cell disease, with parental/guardian consent. We collect only what's needed to provide care or peer support, and parents/guardians have full rights to access and correct.

We do not knowingly collect data from children under 13 outside this care context. If you believe we've collected such data, contact us and we'll delete it.

9. Contact & complaints

For questions about this policy, or to make a privacy complaint:

• Email: tascanz@muskaancaretrust.org.nz
• Phone: +64 21 231 8485
• Post: Muskaan Care Trust, Privacy Officer, Auckland, New Zealand

If you're not satisfied with our response, you can complain to the Office of the Privacy Commissioner at privacy.org.nz or call 0800 803 909.

This policy may be updated from time to time. The latest version always lives at this URL. Significant changes will be announced via our newsletter and on our home page.