Terms of use

About this site

nipbl.org is run by the NIPBL Therapeutics Foundation. We share information about NIPBL, Cornelia de Lange syndrome and our research, and ways to support that work.

Not medical advice

Everything on this site is for general information and education. It is not medical advice and does not replace care from a qualified clinician. Always talk with your child’s care team before making health decisions.

Research in progress

Our Progress and For Researchers pages describe research that is still under way. Timelines, results and outcomes can change, and nothing on this site promises that a specific treatment will become available.

Donations

Donations are made through RareVillage, and its terms apply to the transaction. Gifts support our mission as a whole and are generally non-refundable; contact us if you made a mistake.

What you send us

When you submit a form, you confirm the information is accurate and that you have the right to share it, including information about a family member in your care. Our Privacy Policy explains how we use it.

Our content

Text, figures and photos on this site belong to the Foundation or are used with permission. You may share our educational content for non-commercial purposes with credit to the NIPBL Therapeutics Foundation and a link to nipbl.org. Please don’t use our name or logo in a way that suggests we endorse you, and don’t reuse family photos without asking.

Links to other sites

We link to family organizations, research databases and other resources we think are useful. We don’t control those sites and aren’t responsible for their content or privacy practices.

Using the site

Please don’t try to disrupt the site, access it in ways it isn’t meant to be used, or send spam, harmful code or false information through our forms.

Disclaimer and limits of liability

We work to keep information accurate and current, but the site is provided “as is,” without warranties of any kind. To the extent the law allows, the Foundation is not liable for losses that come from using the site or relying on its content.

Changes

We may update these terms. The date at the top shows when they last changed, and continuing to use the site means you accept the current version.

Contact us

NIPBL Therapeutics Foundation · shivika@nipbl.org