Privacy Policy Statement for SDSF

The Shwachman Diamond Syndrome Foundation is dedicated to protecting the privacy of visitors to our Web site. SDSF has adopted the following privacy policy governing its website. We do not sell or rent your personal information to anyone. Although SDSF is not governed by the privacy rules implemented under HIPAA, the SDSF is committed to preserving your personal information in accordance with this policy. The Health Insurance Portability and Accountability Act (“HIPAA”) was enacted by Congress in 1996 and provides national standards to protect the privacy of personal health information.  HIPAA applies only to “covered entities” such as health plans, health care clearinghouses and health care providers.

  • It gives patients more control over their health information.
  • It sets boundaries on the use and release of health records.
  • It establishes appropriate safeguards that health care providers and others must achieve to protect the privacy of health information.
  • It holds violators accountable, with civil and criminal penalties that can be imposed if they violate patients’ privacy rights.
  • And it strikes a balance when public responsibility supports disclosure of some forms of data – for example, to protect public health

SDSF also adheres to the HONcode principles of the Health On the Net Foundation. Health On the Net Foundation is a non-profit, non-governmental organization promoting and guiding the deployment of useful, reliable online medical & health information, and its appropriate and efficient use. Created in 1995, it is one of most respected not-for-profit portals to medical information on the Internet. The HONcode is an authoritative set of voluntary guidelines designed to raise the quality of web-based medical and health information and today, it is the most widely endorsed set of ethical guidelines for site developers related to health information. Our Web site automatically collects information about the IP address, browser type, domain name, date and time of access and general location (country of access) of all visitors. Personal information is not collected on the SDSF Web site, except in instances where users voluntarily provide their information.

You provide SDSF with personal information on a voluntary basis when you choose to register with us through the New Family Packet form, subscribe to our e-newsletter, make a donation, or register for SDSF conferences. Through these mechanisms, we may collect information such as your credit card number when you make a financial transaction and personal demographics, like yourname, address, phone number, email address, etc.

SDSF respects the personal privacy of the visitors to our Web site. We believe keeping your information private and secure is very important. SDSF undertakes to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

In general, SDSF gathers information about users as a group, such as the pages visited and services used most frequently. This information is anonymous and SDSF only uses such data in the aggregate to analyze site traffic for general promotional purposes, and for making decisions about the future strategy and direction of the website. SDSF has a variety of reasons to study user demographics, interests and behavior based on the information volunteered, including to better identify information needs of people with Shwachman Diamond Syndrome and to improve the services offered by SDSF.

The aggregated information may also be shared with third parties to promote SDSF services and the Web site, or to add to general knowledge concerning the need for Shwachman Diamond Syndrome disease, bone marrow failure disease education and treatment services.

This Web site uses cookies. When you register with SDSF online, a cookie (a small text file) is placed on your computer by our system. The data contains a unique identification number assigned by our system that recognizes your computer when you come to our Web site, but does not recognize you as an individual. These cookies remain on your computer and are automatically retrieved when you return to our Web site at a later time. We use cookies to remind us to send you information you have requested and to deliver to you, a more personalized service. Cookies also allow us to automatically log you in to the Educational Materials page of our Web site without requiring you re-enter your user information. You may choose to set the properties of your computer so that you are alerted each time a cookie is being stored or you may choose to prohibit the storage of cookies all together. In addition, you may delete cookies that have already been stored on your computer. If you do prohibit the storage of cookies, you should understand you will need to re-enter your email address and other information each time you access any portion of our Web site which requires identifying information.

SDSF reserves the right to disclose or access account information when it has a good-faith belief that such disclosure is necessary for compliance with any law.

We provide no mechanism for an advertiser to reach you, unless you sign up directly with an advertiser or outside vendor.

SDSF sometimes contracts with outside vendors and business partners to fulfill customer services and hosting services for the website. When we do, we endeavor to work only with partners who adhere to a compatible privacy policy and/or to enter into confidentiality and non-disclosure agreements with vendors stating they will hold information received through our site confidential and will not sell or share user information to any third party or use the information for their own personal use.

SDSF may disclose information to law enforcement and other authorities in the rare case when there is reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with (either intentionally or unintentionally) SDSF’s rights or property, other users or anyone else that could be harmed by such activities.

SDSF may change this Privacy Policy at any time by posting the change on its Web site, and it is your responsibility to be aware of any changes. Your use of the SDSF Web site constitutes acceptance of the terms of this Privacy Policy.


Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
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