These policies can change upon the discretion of legal counsel.
Terms and Conditions
Information Collection and Use
Governing Law
Copyright and Trademark

Commercial Support
Notice of Information Practices With Regard to Children
Volunteer Policies

Agreements, Applications and Forms

Terms and Conditions

Thank you for visiting Turner Syndrome Foundation’s (TSF) web site(s) and reviewing our Use & Privacy Policy. Our Web site(s) provide information for patients, caregivers, volunteers, consumers and healthcare professionals as part of the TSF mission to help improve patient outcomes. By visiting this web site(s), you are accepting the policies and practices described in this Notice.

Turner Syndrome Foundation, Inc.(“TSF”) Privacy Policy applies to TSF’s main website at TSFUSA.org and all other websites operated by TSF (collectively, the “TSF Websites”).  Our postal address is PO Box 726, Holmdel, NJ 07733.  We can be reached via email at info@tsfusa.org or by telephone at 800-594-4585


The resources provided on this site are for general information only and are not intended to be a substitute for professional medical advice, diagnosis, or treatment. TSF does not endorse any medical product, treatment protocol or service or provide medical advice to patients or their loved ones, nor is it responsible for material you find on other sites. Users of these resources should not rely exclusively on the information provided, as information about health care changes constantly. All specific medical questions should be discussed with your own health care provider.


TSF makes great effort to provide secure, accurate and complete information on this web site. However, portions of the information contained in this site may be incorrect or not current. Turner Syndrome Foundation, Inc., its officers, employees, volunteers or agents shall not be liable for damages or losses of any kind arising out of or in connection with the use or performance of information, including but not limited to, damages or losses caused by reliance upon the accuracy or timeliness of any such information, or damages incurred from the viewing, distributing, or copying of those materials. The materials and information provided on this website are provided “as is.” No warranty of any kind, implied, expressed, or statutory, including but not limited to the warranties of non-infringement of third party rights, title, merchantability, fitness for a particular purpose, and freedom from computer virus, is given with respect to the contents of this web site or its hyperlinks to other Internet resources.TSF disclaims any duty or obligation to either maintain availability of or to update the information contained on any of these web sites.


The Turner Syndrome Foundation, Inc. website(s) is designed for educational purposes only and is not intended to serve as medical advice. The information provided on this site should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care professional.
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Reference in this web site to any specific commercial products, processes, or services, or the use of any trade, firm, or corporation name is for the information and convenience of the public, and does not constitute endorsement, recommendation, or favoring by TSF, or its officers, employees or agents.


The IRS has determined the Turner Syndrome Foundation, Inc. to be a charitable 501(c)(3) nonprofit organization, EIN 27-1409942. For information about the specific tax benefits to which you may be entitled, please consult your tax advisor or attorney.


Should you respond to the Site by providing feedback, such as questions, requests, opinions, comments, suggestions, ideas, or the like, such information shall be deemed to be the property of TSF. TSF shall have no obligation of any kind to the User with respect to such information and shall be free to reproduce, use, disclose and distribute the information to others without limitation and without license. TSF shall be free to use any ideas, concepts, know-how or techniques contained in such information for any purpose whatsoever.

Intellectual Property

Information, publications and other content contained on this site are the property of Turner Syndrome Foundation, Inc. TSF respects other copyrights and does not knowingly infringe on copyright of intellectual property. Copies of the materials on this site may be downloaded, printed and photocopied for personal or educational purposes without permission. Use of our publications, in whole or in part, for other purposes requires prior written permission.

If you are interested in receiving large quantities of materials or using an excerpt, reprinting, or translating materials found on this site for commercial use, please contact us at info@tsfusa.org.


TSF uses Secure Socket Layer (“SSL”) encryption to protect credit card and meets the stringent regulations to be PCI compliant.  SSL is the industry standard security protocol.

Website Management:
Technical questions or concerns about this Website should be directed to: info@tsfusa.org or in writing at:  Webmaster, Turner Syndrome Foundation, Inc., PO Box 726, Holmdel, NJ 07733

Privacy and Use

Information Collection and Use

You may use a TSF Website without disclosing personal information. Some TSF Websites permit a user to register by creating an account and selecting a unique password.  It is optional for a user to complete a registration form.  If a user chooses to complete one, a user is required to give certain information.
We will use this information for the service or information you have requested.  We collect the email addresses of those who communicate with us via email, aggregate information on which pages visitors access, and gather information volunteered by the visitor, such as on-line donation data, survey information, and/or guest book registrations.  Personal data such as your name, address, and payment information may be collected for the purposes of: responding to a specific question, advising visitors of new online material, activities and events, and offering opportunities for contributing to local and national programs, and research initiatives.
If you make a donation on a TSF Website, your contact information will be entered into our Donor Database, and unless specified your name will be included in the annual giving report.

You assume full responsibility and risk associated with use of the site and the internet. You acknowledge and agree that any uploads or transmissions you make may be intercepted and used by an unauthorized third party ad that  all of the risk associated therewith is solely yours.
If you create a personal fundraising page or use any TSF social media platforms, ie. Facebook, Twitter, Blog, Forum, LinkedIn, etc, this information will be public and governed by social networking platform. Pages can be edited or taken down if they do not conform to TSF standards and practices, are harmful to others or the reputation of TSF or its staff.

Linking Sites

Linking Policies
Turner Syndrome Foundation links to other sites that may be of interest to those who use our site. TSF is not responsible for the privacy practices or the content of such Web sites. TSF’s website and materials may contain hypertext or links to other internet computer sites, which are not owned, operated, controlled or reviewed by TSF. These links are provided solely as a courtesy and convenience to you, the visitor.TSF, its officers or employees, exercise no control over the organizations, views, accuracy, copyright or trademark, compliance or the legality of the material contained on those servers and do not sponsor, endorse, or approve the information, content, proceeds, materials, opinions or services contained on such external sites. The visitor proceeds to those external sites at their own risk. TSF specifically disclaims any and all liability from damages, which may result from the accessing of a third-party site, which is linked to TSF’s web site, or from reliance upon only such information.


If you are interested in listing Turner Syndrome Foundation, Inc. as a resource on your website site, please contact us at info@tsfusa.org for permission.


If you are interested in having your organization’s website listed on our site, please determine if your organization meets the criteria below. In order to be listed your organization should:
1. Focus on public education or patient advocacy
2. Have goals that support, or are in line with the mission of Turner Syndrome Foundation.
3. Have content that is relevant to the topics offered on this site
4. Have content that is peer-reviewed by experts
5. Be national in scope

If your organization meets these criteria, please send an email with your organization’s name, website address (URL) and contact information to info@tsfusa.org. All requests will be reviewed and posted upon approval.

Governing Law

This Web site is property of Turner Syndrome Foundation, Inc. incorporated in the State of New Jersey, County of Monmouth, of the United States of America. It can be accessed from all 50 states, as well as from other countries around the world. As each of these places has laws that may differ from those of New Jersey, by accessing this Web site both you and Turner Syndrome Foundation, Inc. agree that the statutes and laws of the State of New Jersey, without regard to conflicts of laws principles thereof, will apply to all matters arising from or relating to use of this Web site. Those who choose to access this Web site from other locations do so on their own initiative and are responsible for compliance with local laws.

Copyright and Trademark

Information, publications and other content contained on this site are the property of Turner Syndrome Foundation, Inc. Copies of the materials on this site may be downloaded, printed and photocopied for personal or educational purposes without permission. Use of our publications, in whole or in part, for other purposes requires prior written permission from Turner Syndrome Foundation, Inc.

If you are interested in receiving large quantities of materials or using an excerpt, reprinting, or translating Foundation materials found on this site for commercial use, please contact us at info@tsfusa.org.


Turner Syndrome Foundation, Inc. is committed to confidentiality of information for its activities and programs. TSF staff members, its volunteers, and paid consultants have an ethical and legal obligation to respect the privacy of all agency and participant information. Furthermore, this obligation extends to protecting and maintaining the confidentiality of all information derived from surveys, studies, databases, or organizational activities.

Commercial Support

Representatives of commercial supporters will observe this policy in their contacts with staff, faculty and others involved in the CME activity.

  1. Funding must involve no conditions regarding the selection of topics or speakers for an activity. Company representatives may not make suggestions about potential topics or speakers.
  2. Commercial funding must be provided to the Turner Syndrome Foundation, Inc. and not directly to speakers or other organizations.
  3. The Turner Syndrome Foundation, Inc. will acknowledge commercial support in printed announcements and brochures, although reference cannot be made to specific products.
  4. The content of slides and educational materials must remain the sole responsibility of the speaker. Such materials may include the name of the commercial supporter, but specific products may not be promoted.
  5. Promotional materials may not be displayed or distributed in areas used for educational activities. Representatives of commercial supporters may not engage in promotional activities in these areas.

We have many successful long-term relationships with drug and medical equipment companies, and this policy is not meant to cast any aspersions on their work. However, this office cannot accept commercial funding unless this policy is fully observed.

Email Disclosure

When you contact us using embedded email links, your email address, name and other information included in the email are forwarded through the site to the appropriate persons within Turner Syndrome Foundation, Inc. to respond.

Communication Opt-Out


If you do not wish to receive future email communications from TSF, please let us know by sending an email to info@tsfusa.org and include the word “remove” in the subject line.

US Mail

If you supply us with your postal address on-line, you may receive periodic mailings from us with information about our programs, upcoming events and/or opportunities to support our efforts.  If you do not want to receive such mailings, please send an email to ifo@tsfusa.org include the words “no mail” in the subject line, and provide us with your exact name and address.  We’ll be sure your name is removed from our mailing list.


People who supply us with their telephone numbers may receive a call from TSF representative regarding orders, events or donations, unless you advise in writing by email info@tsfusa.org and include the word “remove telephone” in the subject line.

Notice of Information Practices With Regard to Children

TSF is  committed to protecting the privacy of children. TSF, nor any of its services, are designed or intended to attract children under the age of 13. Without prior parental consent, we do not collect personally identifiable offline contact information, distribute to third parties any personally identifiable information or give the ability to publicly post or otherwise distribute personally identifiable contact information.

Volunteer Policies

The Turner Syndrome Foundation, Inc. (the “Foundation”) appreciates those who wish to give of their time and talents for the benefit of the organization and its goals. The purpose of this Talent Management Handbook is to explain daily operations, policies and procedures, and provide overall guidance for any individual wishing to volunteer for the Foundation. Volunteers are expected to carry out their responsibilities to the best of their ability, in accordance with our Code of Conduct policy, while upholding the Foundation’s mission and adhering to these policies. Your role as a volunteer is critical to the mission of the Foundation.

Agreements, Applications and Forms
Event Organizer Form
Non-compete and Non-Disclusure Agreement
Name & Likeness Release
Professional Application
Volunteer Application
Volunteer Talent Management Handbook


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