Privacy policy

Who we are

This site is built and maintained by Libi's parents — an Israeli family living with NEDAMSS (the disorder caused by IRF2BPL gene variants). It is not a commercial service, not a hospital, and not a research institution.

For privacy questions, write to contact@nedamss.com.

What we collect

Only what you choose to send us through the contact form or by emailing us:

• Your name
• Your email address
• Your phone number (optional)
• Your country / region (optional)
• What you choose to write in the message field

The form does not ask for clinical or genetic information about a patient. If you choose to include some in the message field, that's your decision, and we treat it as private.

What we use it for

To reply to your message and, if you want, stay in touch about NEDAMSS-related news, family connections, or research opportunities. We don't run advertising or profiling.

Where the information lives

Form submissions reach us as email through this chain:

1. Your browser sends the form to Resend, an email delivery service
2. Resend forwards it to a Gmail inbox controlled by Libi's parents
3. Cloudflare fronts the site and routes mail for the nedamss.com domain

The submission lives in our Gmail inbox after that. We don't copy it to a database or any other system.

These services process data on servers outside Israel, including in the United States.

Who can see your information

Only Libi's parents see incoming messages. We do not share your name, email, or phone with anyone — not other families, not researchers, not pharmaceutical companies, not media — without first asking you and getting your agreement.

If something you share is relevant to a broader NEDAMSS conversation (a variant, a phenotype description), we may discuss the content with researchers or other families in a de-identified form, stripped of your name, contact details, and anything that could re-identify you. Connecting you directly with another person never happens without your prior approval.

Your rights

Write to contact@nedamss.com to:

• Ask what information we have about you
• Ask us to correct or delete it
• Ask us to stop contacting you

We respond within 30 days. You can also lodge a complaint with the Israeli Privacy Protection Authority (הרשות להגנת הפרטיות).

How long we keep your information

For as long as we operate the site, the same way you'd keep an email thread. If you ask us to delete it, we do so within 30 days and confirm in writing.

Information about minors

If you're a parent or guardian writing about a child, you confirm you have the authority to do so. We don't ask for the child's name or details through the form. If a person who was written about as a child reaches 18 and contacts us, they have the right to ask what we hold, correct it, or delete it.

If you're a minor under 18 and want to contact us about your own situation, please write first and we'll figure out the right way.

Security

The form is served over HTTPS, the inbox is protected by two-factor authentication, and access is limited to Libi's parents. Email is not end-to-end encrypted; if you'd prefer to share something sensitive by phone or in person, write to us and we'll arrange it.

If we become aware of a security breach affecting your information, we'll notify you and, where required, the Privacy Protection Authority within 72 hours.

Tracking and cookies

The site is fronted by Cloudflare, which collects basic, aggregate traffic statistics without tracking cookies and without sharing data with advertisers. The site does not run Google Analytics, Facebook Pixel, or any third-party trackers. The only other external request is to Google Fonts.

Changes

If we change this policy, we'll update the date at the top.