Privacy Policy


This privacy policy sets out how Congenital Hyperinsulinism International uses and protects any information that you provide to Congenital Hyperinsulinism International when you use the website, join the Congenital Hyperinsulinism International mailing list, or attend or participate in a Congenital Hyperinsulinism International program, meeting, or conference.

Congenital Hyperinsulinism International is committed to ensuring that your privacy is protected. Should we ask you to provide certain information by which you can be identified, you can be assured that it will only be used in accordance with this privacy statement. We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. We may use your personal information to send you information we think you may find of interest. Congenital Hyperinsulinism International may change this policy from time to time by updating this page. You should check this page to ensure that you are happy with any changes.

What do we collect?

The website will not automatically collect any personal information from visitors. If you would like to receive information from Congenital Hyperinsulinism International, you may join our mailing list.

What do we do with the information we gather?

We utilize this information to understand your needs and to respond appropriately, and for the following reasons:

Internal recordkeeping

We may use the information to improve our communications and information delivery.

To send you information

We may periodically send information such as newsletters, organizational updates, news about medical research on congenital hyperinsulinism, networking and fundraising opportunities, new diagnostic or treatment options, or other information that we think you may find interesting or helpful using the email address, mailing address, or other means of communication you have provided.

We do not sell or share any information with other individuals or organizations.


We are committed to ensuring that your information is secure. In order to prevent unauthorized access or disclosure of your contact information, we use a customer relationship management platform called eTapestry, a division of Blackbaud. This is a statement from Blackbaud about data security pulled from this link:

Your data is fully encrypted — not just for login information, but also for all eTapestry® functions. Data security includes an environment protected by the latest firewalls, router settings, and storage devices. It’s an environment securely protected against natural disasters, attacks, and viruses. You can export a copy of your data at any time for your own use or as a local backup.

We have applied physical, electronic, and managerial procedures to safeguard and secure the information we collect online.

How we use cookies

A cookie is a small file that asks permission to be placed on your computer’s hard drive. We use traffic log cookies to identify which pages are being used. This tool can analyze data about webpage traffic so that we can make improvements to our website in order to tailor it to visitor needs. This analytical information is only for statistical analysis purposes.

Overall, cookies can help create a better website by enabling the monitoring of pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us. You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from experiencing full advantage of the website.

Links to other websites

Our website may contain links to other websites of interest. However, once you use these links to leave our site, you should note that we do not have any control over other websites. Therefore, we cannot be responsible for the protection and/or privacy of any information that you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statements applicable to websites in question.

Controlling your personal information

You may choose to restrict the collection or use of your personal information. When you are asked to fill in a form on the website, you may choose not to provide any/all of the information requested. Only first and last name, and email address is required. We require the bare minimum of information so that you can stay connected to CHI.

If you have previously agreed to share your personal information with us, you may change your preference(s) at any time by emailing us at If you believe that any information we are holding on you is incorrect or incomplete, please email us as soon as possible at the above address. We will promptly correct information according to your direction/instruction.

If you are subject to EU data protection law (including the GDPR) and are joining our mailing list, we’ve updated your opt-in choices to reflect the new requirements under the GDPR.

Questions, complaints, or requests to rescind consent to share information may be addressed to:

Jennifer Schmitt
Data Protection Officer
Congenital Hyperinsulinism International

When you visit the Opt-in Mailing List page of the website, you will be asked if you opt-in to submitting contact information to Congenital Hyperinsulinism International. If you do not opt-in, you will not be added to the Congenital Hyperinsulinism International mailing list.