Privacy Policy

Modern communication technologies play a fundamental role in the activities of SPOHNC. Although based in the USA, our activities involving support and information are on an international level. Protecting your privacy and your personal data is an important aspect of the way we organize and implement our on-line and off-line activities. The following discloses our information gathering and dissemination practices for SPOHNC’s web site.

Users may easily access SPOHNC’s home page at and may browse our web site without disclosing any personal data. However, our web site uses two order forms for individuals to request information and services. Both forms can be completed, downloaded, and mailed to our office address (P.O. Box 53, Locust Valley, NY 11560-0053). Personal data collected from these forms is used for membership in SPOHNC, subscriptions to News From SPOHNC and mailings of past newsletters. SPOHNC collects your personal data only with your knowledge and consent.

E-mail sent to or containing personal data including health information is collected and used to provide information and support by phone, mail or E-mail through the SPOHNC office. This information may be included in SPOHNC’s “Survivor to Survivor” network.

SPOHNC’s web site also contains links to other sites. SPOHNC is not responsible for the privacy practices or the content of such Web sites.

Users may avail themselves of the following options for removing, changing or modifying their information in our database.

  1. You may send email to
  2. You may send mail to P.O. Box 53, Locust Valley, NY 11560-0053
  3. You may call the following telephone number: 1-800-377-0928

SPOHNC ensures that your personal data consisting of your full name, street address, city or town, zip code and E-mail address, as well as telephone number and personal health information will not be disclosed to any third party without authorized permission from you.

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