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Privacy Statement

NOAH’s Privacy Policy

Protecting your personal privacy is very important to us. We hope the following statement will help you understand how the National Organization of Albinism and Hypopigmentation (NOAH), collects, uses and safeguards the personal information you provide.


Information Collection

When you browse the NOAH website, you do so anonymously. Personal information, including your email address, is not collected. Certain Web pages, however, may request that you voluntarily supply personal information, including your email address, for purposes such as correspondence or site registration. We may ask for information such as: name, email address, telephone number, mailing address and family information. Other optional information may be requested if you are registering for an event or subscribing to a service. Like many other not-for-profit and commercial websites, NOAH may use a standard technology called a “cookie” to collect information about how our site is used. Please continue reading to learn more about cookies.

Information Use

We collect only information that is needed, and we tell our members and website users how we use it. We limit the collection of information about our users to what we need to know to provide information, to offer new services, and to fulfill any legal and regulatory requirements. We tell our users about the general uses of information we collect about them, and we will provide additional explanation if requested.

We give website users access to their data online. A user may change, update or add additional information about themselves at any time through our Web pages which offer this feature.

We use information security safeguards. Access to user data is limited to those who specifically need it to conduct their business responsibilities.

We limit the release of NOAH contacts and website users’ information. We release user information only at the user’s request, or when required to do so by law or other regulatory authority. When a court order or subpoena requires us to release information, we notify the user directly so that his / her legal rights can be exercised, if appropriate. The only exceptions to this policy are when we are prohibited by court order or law from notifying the user, or cases in which fraud and/or criminal activity is suspected.

Your Contact Information

If you give your email address, or have done so in the past, we may send you email information or newsletters.These information emails or newsletters are based on information you provided in registration forms, in surveys, as well as information available from external sources. These emails will come only from NOAH. Your information or email address is never sold to a third party.

The data you provide is used to enhance the services NOAH brings you. As a result of providing personal information, NOAH can provide a more customized online experience, making your interaction with us more productive, helpful and fun.

Declining email. At any time, you may request to discontinue receiving email from us by simply replying to the email address included in every email message you receive from NOAH.

About researchers: From time to time, organizations researching albinism request information or research participants from NOAH. NOAH will not release information about individual contacts or website users to researchers, nor will we provide researchers with email addresses or other contact information about our contacts or website users. If the NOAH Board of Directors, in consultation with the NOAH Board of Scientific Advisors, feels a research project is valuable to the albinism community, NOAH, in accordance with policies defined in this statement, will make our contacts aware of the project. Please keep in mind when you post your contact information on publicly accessible internet forums, other parties, including researchers and students, have access to your email address and might contact you directly.

What else should I know about my privacy?

Third party Internet sites and services accessible through NOAH website pages have separate privacy and data collection practices, independent of NOAH. NOAH has no responsibility or liability for these independent policies or actions. You are solely responsible for maintaining the secrecy of your passwords, membership ID or any account information.

Your posts on NOAH-sponsored community forums or chat rooms are publicly accessible. Please be careful and responsible whenever you are online. If you post personal information online that is accessible to the public, you may receive unsolicited messages from other parties in return. While we aim to protect your personal information, NOAH cannot ensure or warrant the security of any information you transmit to us, and you do so at your own risk.


A cookie is a small string of text that a website can send to your browser. Websites use cookies to enhance the user’s visit; in general, cookies can store a user’s ID and password, personalize home pages, or identify which parts of a site have been visited. If you are just browsing a NOAH-sponsored website, a cookie, if in use, only identifies your browser. If you become a registered user on a NOAH website (with a designated user ID and password), we may use cookies so that we can provide personalized information that we believe will be of value to you based on preferences you have stated while visiting the site. It is possible to set your browser to inform you when a cookie is being placed — this way, you have the opportunity to decide whether to accept the cookie. If you are just browsing one of our sites and are not a registered user, you do not have to accept a cookie and you may still continue utilizing the site, though you might not be able to experience the site to fullest extent.