Privacy Policy

Privacy Policy

The Gorlin Syndrome Alliance (GSA) is a non-profit charitable organization devoted to thoughtfully support, comprehensively educate and aggressively seek treatments and a cure for Gorlin syndrome, its manifestations and sporadic BCCs. The GSA website is an important tool in carrying out our mission, and we want all its users to be comfortable and confident when you use the website and/or contact our office. For that reason, we have adopted this privacy policy.

The following are basic guidelines in place to ensure a civil, respectful discussion that adds to the richness of GSA’s publications and communications dialogue. This privacy statement discloses the privacy practices for Gorlin Syndrome Alliance and for those persons who utilize any GSA publications and communications including but not limited to the following: GSA Websites, Facebook, Twitter, Pinterest, YouTube, Online Communities, Other (Emerging), Mobile Applications, Educational Materials, Conferences & Meetings, Fundraising Events, and Story Campaigns. Gorlin Syndrome Alliance is dedicated to protecting the privacy of all involved and ensuring their ability to use our publications and communications with confidence.

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 with the Gorlin Syndrome Alliance 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 Gorlin syndrome, 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.

Policies regarding disclosure of personal information

The Gorlin Syndrome Alliance does not make available the names and addresses of our contributors to other companies or organizations, although GSA does offer programs in which members must consent in advance before a member’s name is disseminated. In addition, GSA will periodically distribute sample products from carefully selected vendors to its members. All such mailings are prepared by GSA, and members’ names and addresses are never provided to the manufacturers.

Member names are provided to a credit card vendor to process credit card transactions. These practices help us reduce the costs of providing more individuals with Gorlin syndrome-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 info@gorlinsyndrome.org. (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 http://www.ftc.gov/ogc/coppa1.htm). Any user-generated content shared to Gorlin Syndrome Alliance’s social media presences which contains nudity will be deleted.

Links to other sites

This site links to other websites unrelated to GSA that are owned and operated by third parties. Gorlin Syndrome Alliance does not make any representations or warranties about any third-party sites you may access through this website. These links are provided solely as a convenience to you and do not constitute an endorsement or affiliation by GSA. GSA is not responsible for the privacy practices, contents of, or any products or services offered on, any third-party sites. You must make your own independent decisions regarding your use of any third-party website. We will not pass your information along to the linked site; however, we cannot protect the information you provide to that site.

When an advertisement appears in our monthly e-news, which provides live links directly to an advertiser’s website, the words “paid advertisement” are placed underneath the ad so that our members, donors and the general public know that Gorlin Syndrome Alliance is not endorsing the product. Other notifications may be added from time to time.

E-mail guidelines

Gorlin Syndrome Alliance 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. GSA 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.

GSA is not responsible for information or advice provided by others, including information on GSA social media sites, websites that link to Association sites, and on third party sites to which the GSA links. Fan-produced content on the GSA Facebook Group page does not necessarily reflect the opinions of Gorlin Syndrome Alliance.

Permission to use material from this website/reprints/copyright
Gorlin Syndrome Alliance retains copyright on the content of this site, unless otherwise noted.

Reprint or reuse of information from this site without change
To request permission to use information from this website for other than personal use, send an email describing intended use, duration and contact information to info@gorlinsyndrome.org.

Translations and adaptations
Translations or adaptations of GSA content must be reviewed and approved by Gorlin Syndrome Alliance. Please send an email describing intended use, duration and contact information to info@gorlinsyndrome.org.

Using content from GSA press releases

Reprint of Gorlin Syndrome Alliance’s content or references to GSA contact information in an organization’s press release must be approved by a person of authority at the Gorlin Syndrome Alliance. Please send queries to info@gorlinsyndrome.org.

Logos

Using any of GSA registered trademarks (logos) without Gorlin Syndrome Alliance’s prior consent is strictly prohibited. Please send written requests describing intended use, duration, and contact information to info@gorlinsyndrome.org.

Photographs and graphics

The photographs and graphics on our website are not available for reproduction by third parties.

Linking policy

When linking to Gorlin Syndrome Alliance’s website, web managers should be aware that GSA trademarks are not available for posting or replication on third party websites without a written agreement with the Gorlin Syndrome Alliance. As part of the permission agreement for web linking, third parties must post the following with any logo, trademark, URL, or content used from the Gorlin Syndrome Alliance’s website – Linking Disclaimer: “This site links to other websites unrelated to Gorlin Syndrome Alliance that are owned and operated by third parties. Gorlin Syndrome Alliance does not make any representations or warranties about any third-party sites you may access through this website. These links are provided solely as a convenience to you and do not constitute an endorsement or affiliation by Gorlin Syndrome Alliance. Gorlin Syndrome Alliance is not responsible for the privacy practices, contents of, or any products or services offered on, any third-party sites. You must make your own independent decisions regarding your use of any third-party website.”

Donor Perfect privacy policy

Donor Perfect, the database software and donor processing company used by Gorlin Syndrome Alliance is PCI compliant. “PCI Compliance” means compliance with the Payment Card Industry Data Security Standard (PCI DSS), an information security standard defined by the Payment Card Industry Security Standards Council.

The overall objectives of the PCI DSS are to build and maintain a secure network, protect cardholder data, maintain a vulnerability management program, implement strong access control measures, regularly monitor and test networks, and maintain an information security policy.

Disclaimer

The Gorlin Syndrome Alliance works to ensure that the information provided on its authorized website is accurate, timely and useful. However, the information contained on Gorlin Syndrome Alliance’s website should not be considered medical guidance or professional advice. GSA does not give medical advice or engage in the practice of medicine and recommends that you consult with your physician or local treatment center before beginning any form of treatment.

Gorlin Syndrome Alliance, its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Visitors are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to licensed physicians or other appropriate health care professionals. Corrections and additions to this site will be made when necessary or as time permits.

How to correct or update information

To change or modify information previously provided, e-mail info@gorlinsyndrome.org or send a letter to:

Attention: Privacy Policy
Gorlin Syndrome Alliance
PO Box 1322
Kulpsville, PA 19443

Tell us what you think

BCCNS Alliance welcomes your questions and comments about this privacy statement, about the practices of BCCNS Alliance, and about your dealings with our website. Please send e-mail to info@gorlinsyndrome.org, or write to:

Attention: Online Services
Gorlin Syndrome Alliance,
PO Box 1322
Kulpsville, PA 19443