Authorship and Review of All Website Content:

The FPIES Foundation is committed to offering credible and up-to-date information about the FPIES diagnosis, management strategies and the existing body of research.

Unless otherwise noted in the text of an article or document, all content on our websites (www.fpiesfoundation.org and www.fpiesday.com) and blogsite (www.fpiesfoundation.blogspot.com) is authored by The Executive Board of The FPIES Foundation and/or The Foundation’s Medical Advisory Board (MAB) who have no conflicts of interest. All medical content is carefully reviewed and edited where necessary for accuracy and clarity of information by the MAB.

Members of the Executive Board are listed here and members of the Medical Advisory Board are listed here.

Translation of Documents Containing Medical Information:

All translations are performed by professionals possessing expertise in the medical field as well as the language in which the translation is made. Translations are also reviewed by individuals who are native speakers of the language in question. The documents on our website that are translated into Spanish have been made by our Medical Advisory Board member, Dr. Sergio Negre Policarpo, who possesses expertise in the field of Gastroenterology, in the diagnosis of FPIES, and in the Spanish language.

Partnerships:

Some content on The FPIES Foundation’s website is developed in partnership with other organizations. The authorship of such content is noted within each specific article, document, and/or webinar as applicable. Ownership of content developed in partnership with another organization or organizations is shared among those involved in its authorship. All content created via partnership is also carefully reviewed and edited where necessary for accuracy and clarity of information by our MAB.

Organizations that The FPIES Foundation decides to partner with are carefully reviewed for credibility and reliability of resources before The FPIES Foundation initiates projects relating to partnerships. Partnerships are based upon the credibility of the organizations in question and the applicability of resources such organizations may offer in regards to benefiting the community of families and medical providers who support individuals diagnosed with FPIES.

The FPIES Global Patient Registry

  • This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
  • For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

Funding of Websites Belonging to The FPIES Foundation:

The cost of publishing and maintaining our websites is funded by individual donations to The FPIES Foundation. Though donations are greatly appreciated, donors do not in any way influence the content of our websites/blog or any other educational products of The FPIES Foundation. At this time and since our founding, all web administration staff are unpaid, working on a 100% volunteer basis, in order to minimize website maintenance costs. For additional information regarding how donations are utilized, please download and view our annual reports.

Privacy Policies:

For information regarding the specifics of our privacy policies, please follow the links below. If there are additional questions, please email us at contact@thefpiesfoundation.org.

  • General Privacy Policy
  • Terms of Use (This includes the social media policy, applicable to all social media applications including The FPIES Foundation’s Hoopla forum)
  • Google Analytics Policy The FPIES Foundation utilizes Google Analytics on its websites in order to better analyze the viewership of our website as well as help to improve our content, so as to better serve the needs of our audience. Confidentiality is of utmost importance to The FPIES Foundation and no personal information is collected from Google Analytics.

Copyright ©, The FPIES Foundation:

Subject to these Terms of Use, The FPIES Foundation grants you a limited, non-exclusive, license to view the materials contained on this site. The information on the FPIESFoundation.org and fpiesfoundation.blogspot.com websites, including the design and organization, trademarks, logos, databases and graphics are Copyright © 2011, The FPIES Foundation. All rights reserved, unless otherwise noted.

Original materials by The FPIES Foundation are for personal use only.  You may use these materials for educational purposes, but only if your use of the materials is non-commercial and nonprofit in nature.  If you use any of these materials, you must use them in printed form, and must include: “Reprinted from FPIESFoundation.org” and the date printed.  You may not otherwise reprint or electronically reproduce all or any part of the materials on the FPIESFoundation.org and fpiesfoundation.blogspot.com websites without advance written permission from The FPIES Foundation.

Information on this website owned or copyrighted by any individual or entity other than The FPIES Foundation is for personal use only. You may not otherwise reprint or electronically reproduce all or any part of this material without advance written permission from the owner of the information.

If you contribute content, including message board and blog postings, you grant The FPIES Foundation a perpetual, limited-use license to use all or part of your contribution in our published materials.  The FPIES Foundation may edit or comment editorially on any submissions.  These materials will not be treated as privileged or confidential.

Advertising

Our site does not host any form of advertising.

Hoopla Support Forum for Families and Caregivers of Children Affected by FPIES

The mission of The FPIES Foundation’s Support Forum is to provide an interactive support resource for individuals impacted by FPIES (as caregivers, as individuals with this diagnosis, as friends/family seeking to support an affected individual, etc) that in turn seeks to empower its members.

The Hoopla Support Forum is a private forum that, in order to participate, users must register and agree to a specific terms of use policy. Upon initiating the registration process, this terms of use document is sent to the user for consent. Without consent, the user cannot participate in the forum.

Users that do not adhere to the terms of use policy can be blocked immediately from participation in this forum, for the protection of all participants. Moderators will determine whether or not to block a user for such offenses or whether to first issue a warning before blocking the individual. Any posts that are advertisements will be immediately deleted and moderators reserve the right to ban the user from future posting. Moderators receive emails notifications of all posts and comments posted on the forum and are able to preview forum content on an ongoing basis as a result.

Moderators are not physicians but are acting members of one of The FPIES Foundation Executive or Volunteer Boards. All moderators are volunteers for The FPIES Foundation (including Executive Board members). There are no known conflicts of interest that may inhibit our volunteers from fulfilling this role. If conflicts were to arise as determined by the Executive Board and/or upon advisement from The FPIES Foundation’s Medical Advisory Board, a different member(s) of The FPIES Foundation’s Executive or Volunteer Board would assume the role(s) of moderator(s).

When interacting on the Support Forum it is important to remember:

  • Always assume that all forum members are NOT medical professionals. This forum does NOT provide any medical advice– it exists for the purpose of supporting others affected by FPIES or caring for someone affected by this condition.
  • Always assume that all children experience FPIES differently in some way. Though the children may share a diagnosis of FPIES, each child and each family will undergo different experiences while living with FPIES.
  • Always proceed with caution in regards to personal information sharing. Any such sharing is done at the sole responsibility of each individual user.
  • You must post information which are true and correct to your knowledge. We invite you to provide resources (references, links, …) on health/medical claims when possible and relevant.
  • If you need to contact a moderator at any time, please email contact@thefpiesfoundation.org and write “FPIES Support Forum” in the title line, so that we can appropriately direct your message to the correct parties.

For additional information, please contact us today at contact@thefpiesfoundation.org. Thank you for your support of The FPIES Foundation.

Page published: December 14, 2015. Copyright © The FPIES Foundation