— Legal

Privacy Policy

Last updated: [DATE]

Who we are

The Hyperoxaluria Global Alliance (“HGA”, “we”, “us”) is a global community of patients, families, caregivers, advocates and patient advocacy organizations affected by hyperoxaluria. HGA was established by the Oxalosis & Hyperoxaluria Foundation (“OHF”) in collaboration with ambassadors from around the world.

OHF is responsible for the personal information collected through this website (the “data controller”).

Oxalosis & Hyperoxaluria Foundation, 579 Albany Post Road, New Paltz, NY 12561
Email: [HGA-EMAIL]

This policy explains what information we collect when you use this website or join the Alliance, why we collect it, and the choices and rights you have.

Information we collect

When you join the Alliance

Our membership form asks for:

your first and last name, email address and country;
how you are connected to hyperoxaluria (patient, caregiver, advocate, patient advocacy organization or other);
for organizations: the organization’s name, website and country of registration, and your confirmation that it is a registered nonprofit or equivalent;
your agreement to the membership expectations; and
whether you would like to receive email updates (optional).

We also record the date and time of your submission, the page you submitted it from and, for security, your IP address and browser type.

Health-related information. Telling us that you are a patient or caregiver may reveal information about your or a family member’s health. We treat this as sensitive information. We use it only to administer your membership and to understand our community, and we process it on the basis of the explicit consent you give when you submit the form.

When you contact us

If you contact us by email or through our contact form, we use the information you provide (such as your name, email address and message) to reply to you.

When you browse the website

Like most websites, our hosting provider automatically logs technical information such as your IP address, browser type and the pages you visit. These logs are used to keep the website secure and working and are kept for a limited time.

How we use your information

To process your membership and keep a record of the members of the Alliance.
To contact you about your membership and next steps.
If you opted in: to send you news, resources, updates, surveys and opportunities to share your voice and take part in Alliance activities.
To understand the needs of the global hyperoxaluria community in a combined, non-identifying way (for example, how many members we have in each country).
To answer your questions and requests.
To protect the website and our forms from spam and misuse.

We do not sell your personal information, and we do not share it with sponsors or other third parties for their own marketing.

Legal basis (for visitors in the EU, UK and similar jurisdictions)

Consent – for email updates and for health-related information. You can withdraw your consent at any time.
Performance of our membership relationship – to administer your membership once you join.
Legitimate interests – to run, secure and improve the website and to answer enquiries.

Email updates and unsubscribing

We only send email updates if you tick the opt-in box on our form. We keep a record of when and where you gave your consent. Every update email includes an unsubscribe link, and you can also unsubscribe at any time by emailing [HGA-EMAIL]. Unsubscribing from updates does not end your membership.

Service providers we use

We use trusted service providers who process information on our behalf:

WP Engine – website hosting. Form submissions are stored in our website database on WP Engine’s servers.
Google reCAPTCHA – protects our forms from spam. It analyses information such as your IP address and how you interact with the page. Use of reCAPTCHA is subject to Google’s Privacy Policy and Terms of Service.
Google Translate (via GTranslate) – if you choose another language from the language menu, the text of the page is sent to Google to be translated. Information you type into a form is not sent for translation.
Consent management (Complianz) – records your cookie choices on this website. The fonts on this website are hosted on our own server, so no data is sent to Google Fonts.
Email delivery – email notifications and updates are sent through email service providers acting on our behalf.

International transfers

OHF is based in the United States and some of our service providers process information outside your country. Where we transfer personal information from the EU, UK or other countries with data-transfer rules, we rely on appropriate safeguards such as the European Commission’s Standard Contractual Clauses.

How long we keep your information

Membership information: for as long as you are a member, and for up to [X] months after you leave or ask us to remove you.
Your email-update consent record: for as long as you are subscribed, and afterwards for as long as needed to show that consent was given.
Messages you send us: for as long as needed to deal with your enquiry.

Cookies

This website uses a small number of cookies that are needed for it to work, for example to remember the language you choose. Google reCAPTCHA may also set cookies to tell people and bots apart. You can manage optional cookies at any time using the Cookie Settings link at the bottom of every page.

Your rights

Depending on where you live, you may have the right to:

access the personal information we hold about you;
correct inaccurate information;
ask us to delete your information;
restrict or object to how we use your information;
receive a copy of your information in a portable format; and
withdraw your consent at any time, without affecting anything we did before you withdrew it.

To use any of these rights, email [HGA-EMAIL]. If you are not satisfied with our response, you have the right to complain to the data protection authority in your country.

Children

Our membership form is intended for adults. If you are under 16, please ask a parent or guardian to join on your behalf.

Links to other websites

Our website links to other organizations, including our partner organizations. We are not responsible for their privacy practices, and we encourage you to read their privacy policies.

Changes to this policy

We may update this policy from time to time. The latest version will always be on this page, with the date it was last updated.

Contact us

If you have any questions about this policy or how we handle your information, please email [HGA-EMAIL].