Privacy Policy

The Foundation for Ichthyosis and Related Skin Types, Inc.™ ("FIRST") is a non-profit charitable organization devoted to assisting individuals and families with the genetic diseases collectively called the "ichthyoses." FIRST provides information and education to both the lay and the professional communities, advocates on behalf of its members in the political and healthcare arenas, and serves as a "bridge" between the ichthyosis community and the medical profession. The Foundation's website is an important tool in carrying out our mission, and we want you to be comfortable and confident when you use the website and/or contact our office. For that reason, we have adopted this privacy policy.

Our Commitment to Privacy
Your privacy is important to us. To protect your privacy, we provide this notice explaining our information practices and the choices you can make about the way your information is collected and used.

Collection and Use of Personal Information
When you request information online, register using one of our forms, or contact us offline, we may need your specific information in order to process your registration/request and reply to your needs promptly. We may ask you for contact information (such as your name, email and address) and demographic information (such as your zip code or age). We also collect demographic and profile data at our website and in our databases. We use this data to tailor your experience at FIRST and to develop and distribute content that we think you might be interested in.

In general, we only use identifiable information to complete the transactions described in this Privacy Policy. In addition, we use any health-related data you provide to us to help us help you through our information, our programs and our services. Part of our mission is to improve the lives of all people affected by the ichthyoses, and we do that by providing appropriate health information to you based upon information you personally provide. We maintain health-related data and do not provide your name and address to outside parties, except as described here.

FIRST Policies Regarding Disclosure of Personal Information
FIRST, unlike many other non-profit organizations, does not make available the names and addresses of our contributors to other companies or organizations, although FIRST does offer programs in which members must consent in advance before a member’s name is disseminated. In addition, FIRST will periodically distribute sample products from carefully selected vendors to its members. All such mailings are prepared by FIRST, and members’ names and addresses are never provided to the manufacturers.

Member names are provided to a credit card vendor in order to process credit card transactions. These practices help us reduce the costs of providing more individuals with ichthyosis-related information. The companies with which your name may be shared are carefully screened. Names/addresses are provided on a one-time basis; therefore, these companies will not have continued access to your name and address unless you respond to them directly, which you are free to do or not to do.

You can request that we do not share your information by emailing us at (If you use more than one email address, postal address or telephone number, please identify each one.)

Our Commitment to Children's Privacy
Protecting the privacy of the very young is especially important. For that reason, we adhere to the 1998 Children's Online Privacy Protection Act (COPPA). (For more information, visit the Federal Trade Commission's COPPA site at

Links to Other Sites
On this website, the Foundation for Ichthyosis and Related Skin Types (FIRST) has provided links to websites maintained by third parties, over which FIRST has no control. FIRST will not pass your information along to the linked site; however, FIRST cannot protect the information you provide to that site. The links provided on this website are for convenience and are for informational purposes only. If you choose to click on any links on this website, you agree that FIRST is not responsible or liable for the content, quality, or accuracy of the data provided on these sites, and agree that the link does not constitute an endorsement by FIRST In addition, when you link to a website operated by a different organization, the FIRST Privacy Policy will not apply and you are subject to the privacy policy of that new site. Please be aware that not all websites have privacy notices and policies.

E-mail Guidelines
FIRST does not send unsolicited commercial e-mail to individuals with whom it does not have consent/permission or a pre-existing or current business relationship. FIRST also provides all e-mail recipients with a clear, easy and effective method to unsubscribe to any and all online communications. We do not offer any online mass communications, only individual direct e-mails.

How to Correct or Update Information
To change or modify information previously provided:

E-mail or send a letter to:

Attention: Privacy Policy
Foundation for Ichthyosis and Related Skin Types, Inc.™
2616 North Broad Street
Colmar, Pennsylvania 18915

Tell us what you think
FIRST welcomes your questions and comments about this privacy statement, about the practices of FIRST, and about your dealings with our Web site. Please send e-mail to, or write to:

Attention: Online Services
Foundation for Ichthyosis and Related Skin Types, Inc.™
2616 North Broad Street
Colmar, Pennsylvania 18915