Privacy policy

Who we are

The NIPBL Therapeutics Foundation (“we,” “us”) runs nipbl.org. This policy covers the site and the forms on it. Questions go to shivika@nipbl.org.

What we collect

We only collect what you choose to send us:

• Contact form: your name, email address and message.
• Newsletter sign-up: your email address.
• Research list: your name, email, optional phone number, your relationship to the person with CdLS, country and state or province, their age range, their genetic diagnosis, any variant details you add, how you heard about us, and your consent choices.

Donations are handled by RareVillage on its own secure platform. We never see your card or bank details. RareVillage shares your name, email, gift amount and any message so we can thank you and send a receipt.

Site visits. Squarespace, which hosts our site, uses cookies to keep it working and to give us basic visitor statistics that don’t identify you. You can block cookies in your browser and the site will still work.

Research list information

Diagnosis and variant details are sensitive, so we treat them with extra care. We use them only to contact you when a study, trial or registry may fit your family. We share your contact details with a study team only if you tick the box allowing it. We never sell this information, and joining the list doesn’t commit you to anything.

How we use it

• To answer your messages.
• To send updates, if you signed up. Every email has an unsubscribe link.
• To process and acknowledge donations.
• To tell you about research opportunities, if you joined the research list.

Who we share it with

We don’t sell, rent or trade personal information. We share it only with:

• The services that run parts of our work: Squarespace (website, forms and email), RareVillage (donations) and Google (where research list sign-ups are stored). They may use it only to provide their service.
• Study teams, and only with your permission.
• Authorities, when the law requires it.

How long we keep it

We keep information only as long as we need it, or as long as the law requires for donation records. You can ask us to delete your information or take you off the research list at any time.

Your choices

• Unsubscribe from emails using the link in any message.
• Ask to see, correct or delete your information by emailing shivika@nipbl.org. We reply within 30 days.

Children

Our site is meant for adults. Parents and guardians may share information about a child, for example on the research list, and we protect it as described above. We don’t knowingly collect information directly from children under 13. If you think a child has sent us information, contact us and we’ll delete it.

Security

We use encrypted connections and limit access to the people who need it. No system is completely secure, so please don’t send more medical detail than a form asks for.

Changes

If we change this policy, we’ll post the new version here and update the date at the top.

Contact us

NIPBL Therapeutics Foundation · shivika@nipbl.org