- 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.
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 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.