Web Site Policies

Privacy Policy, Links Policy, Terms of Use & DISCLAIMER

Scope

The Privacy Policy, Terms of Use statements, & Disclaimer apply to all aspects of this website operated by, or on behalf of the Lymphangiomatosis & Gorham’s Disease Alliance, Inc. (hereinafter referred to as the LGD Alliance).

Privacy Policy

The LGD Alliance respects the privacy of visitors to its website and recognizes its responsibility to keep confidential any personal information which visitors may provide.

Information Collection and Use

The nature of the website visitor information we collect is generally of two types: 1). website traffic, and 2). personal information.

Examples of website traffic data are: the tally of visitors to the website, pages viewed, and duration of visit. This data is used to assist us in the ongoing management of the website and/or improving visitor services.

From time-to-time we collect personal information provided by visitors. Examples of this may be requests to be added to our regular or email mailing lists, or registering to participate in the website Discussion Forum, or, perhaps, enrolling as a volunteer or supporter, or participation in a survey, or possibly through donation. We collect this information only when a visitor provides it – and it may include a visitor’s name, street address, city, state, zip, phone number, and email address. Visitor information may be used for periodic – regular or email – mailings which convey current news about the foundation.

The LGD Alliance does not sell, trade, or rent visitor personal information. We will keep confidential all personal information, including benefactor information, except that which the LGD Alliance is legally required to disclose. If at anytime a visitor wishes to decline receiving our regular newsletters, the visitor may send either a letter with a one sentence request to:

Or, send such a similar request via email to info@lgdalliance.org providing the appropriate contact information as well.

By visiting the LGD Alliance website, or providing personal information, the visitor consents to the collection and use of information as described in these relevant policies.

If a visitor who has previously provided personal information to the LGD Alliance via this website wishes to review, change, modify, update, or delete such data, please submit your changes or requests to:

or email changes or inquiries to: info@lgdalliance.org.

Links Policy

In furtherance of its information-access aims, the LGD Alliance website contains select links to other websites. The links are provided only as a compliment of our intent to provide information about the many varied and sundry aspects a patient and/or family must try to cope with in the course of the very rare diseases of lymphangiomatosis & Gorham’s disease. The links may be of interest to the patient community. We caution our visitors who may use the links that we are not, nor can we be, responsible for the material, the policies, or privacy practices at other sites to which we have provided links. Providing a link constitutes neither a validation of the material offered, nor an endorsement of that material. The information displayed by the LGD Alliance website, or the information displayed by the sites we provide a link for are no substitute for qualified, professional medical advice, consultation or care. We urge all visitors to discuss any information you may acquire – from the LGD Alliance website, or from any website we provide a link to – and all questions you may have about your medical condition – with a qualified medical professional.

We further alert visitors to the LGD Alliance website that they should read the privacy statements of every website which they may link to. The foregoing Privacy Policy applies solely to the information collected on our website.

The LGD Alliance may allow its website address to be posted as a link from select websites. These inter-links are permitted as long as they are in furtherance of the informational and educational aims of the LGD Alliance, and serve to increase patient/family, public, and medical community awareness and understanding of the very rare diseases of lymphangiomatosis & Gorham’s disease.

Terms of Use

©2008 Lymphangiomatosis & Gorham’s Disease Alliance, Inc. All rights reserved. Unauthorized use prohibited.

The LGD Alliance materials are protected by U.S. and international copyright laws and may not be reproduced for commercial use. The LGD Alliance welcomes visitors to use our website to obtain information which they may find useful. These Terms of Use apply to all visitors to the LGD Alliance website, incorporating all revisions as they are posted. In accessing, browsing, searching, or posting any comments, visitors agree to be governed by these Terms of Use. Users shall also be governed by the posted rules of communication in certain areas such as the code of conduct in the Discussion Forum, and other posted guidelines prohibiting merchandising. The LGD Alliance reserves the absolute right to remove any information, at anytime, from its website, which it deems, in its sole opinion, to be inappropriate.

We stress the importance to all visitors that they take note of the DISCLAIMER below with regard to any and all: information, services, products, postings, Discussion Forum content, and links provided.

DISCLAIMER

THE INFORMATION CONTAINED IN THE LGD ALLIANCE WEBSITE IS PROVIDED WITH THE UNDERSTANDING THAT THE LGD ALLIANCE IS NOT ENGAGED IN RENDERING MEDICAL ADVICE OR RECOMMENDATION. THE MATERIAL PROVIDED IS SOLELY INTENDED FOR EDUCATIONAL AND INFORMATIONAL PURPOSES, AND AS A BENEFIT AND SERVICE IN FURTHERANCE OF THE LGD ALLIANCE’S MISSION. THIS INFORMATION DOES NOT REPLACE NECESSARY CONSULTATIONS WITH A QUALIFIED HEALTH CARE PROFESSIONAL.

THE INFORMATION CONTAINED IN THE LGD ALLIANCE WEBSITE IS NEITHER PRESENTED AS, NOR INTENDED TO BE, A SUBSTITUTE FOR MEDICAL INQUIRY, ADVICE CONSULTATION OR TREATMENT. VISITORS ARE CAUTIONED THAT: THEY SHOULD NOT RELY ON ANYTHING ON THIS WEBSITE WHICH IS PROVIDED BY THE LGD ALLIANCE, OR ANYTHING WHICH MAY BE POSTED ON OUR WEBSITE OR DISCUSSION FORUM BY A VISITOR – AS A MEASURE OR STEP IN THE COURSE OF TREATMENT FOR ANY MEDICAL CONDITION, WHATSOEVER. THE LGD ALLIANCE URGES VISITORS TO CONSULT WITH THEIR MEDICAL DOCTOR OR OTHER QUALIFIED MEDICAL PROFESSIONALS PROMPTLY IF THEY HAVE, OR SUSPECT THEY HAVE, A MEDICAL PROBLEM.

THE LGD ALLIANCE AND ITS RESPECTIVE AGENTS AND REPRESENTATIVES, BOTH INDIVIDUALLY AND COLLECTIVELY, MAKE NO REPRESENTATIONS WITH RESPECT TO THE CONTENTS HEREOF, AND SPECIFICALLY DISCLAIM ANY OTHER WARRANTIES, INCLUDING BUT NOT LIMITED TO IMPLIED OR EXPRESS WARRANTIES OF MERCHANTABILITY OR FITNESS FOR ANY PARTICULAR USAGE, APPLICATION OR PROCESS.

Changes and Updates

The policies of the LGD Alliance are subject to change without prior notice to visitors. Changes are effective immediately and will be posted in the appropriate place on the website.

How to Contact Us

Visitors may send questions about policies and website usage to:

Or email inquiries to: info@lgdalliance.org.