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 variants in the IRF2BPL gene. It is not a commercial service, hospital, or research institution.

For privacy questions, use Open the contact form.

What we collect

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

• 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 such information in the message field, that is 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 do not run advertising or profiling.

Where the information lives

Form submissions reach us by email through the following 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

After that, the submission remains in our Gmail inbox. We do not 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 address, or phone number with anyone — not other families, researchers, pharmaceutical companies, or media — without first asking you and getting your agreement.

If something you share is relevant to a broader NEDAMSS conversation, such as a variant or phenotype description, we may discuss the content with researchers or other families in a de-identified form, without your name, contact details, or anything that could reasonably re-identify you. We never connect you directly with another person without your prior approval.

Your rights

Use the contact form 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, in the same way one might keep an email thread. If you ask us to delete your information, we will 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 under 18 and want to contact us about your own situation, please write first and we'll figure out the right way together.

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 sensitive information 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 uses Vercel Analytics and Cloudflare Web Analytics for basic aggregate traffic measurement. These tools are not advertising pixels and we do not use them to sell, profile, or share personal information with advertisers. The site does not run Google Analytics or Facebook Pixel. Contact forms may load Cloudflare Turnstile for spam protection, and pages load Google Fonts.

Changes

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