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terms of use

The opinions expressed in Living in the Light (“LITL”) user-generated content areas like communities, reviews, ratings, guestbook entries, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of LITL. User-generated content areas are not reviewed by any member of the LITL editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. LITL does not endorse any specific product, service or treatment.


Do not consider user-generated content as medical advice. Never delay or disregard seeking professional medical advice form your doctor or other qualified healthcare provider because of something you have read on (LITL’s website). You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. LITL understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.


The individual using LITL’s website at may view or store copies of articles provided that the articles are used ONLY for their personal, noncommercial use. Uses beyond that allowed by the "Fair Use" limitations (sections 107 and 109) of the U.S. Copyright laws require permission of the publisher.


Information Disclaimer and Legal Agreement

Please read this agreement entirely and carefully before using the LITL website (


By using the Living in the Light (“LITL”) site, you agree to be bounds by the terms and conditions below and in the LITL Privacy Policy. If you do not wish to be bound by these terms and conditions, you may not use this site.


Disclaimer About Medical Information:

The information and reference materials contained here are intended solely for the general information of the reader. It is not to be used for treatment purposes. The narratives/personal stories/information presented here is not intended to diagnose health problems or to take the place of professional medical care. The information contained therein is neither intended to dictate what constitutes reasonable, appropriate or best care for any given health issue, nor is it intended to be used as a substitute for the independent judgement of LITL in the inability to take into account the unique circumstances that define the health issues of the patient. If you have persistent health problems or if you have further questions, please consult your healthcare provider. All visitors to this and other LITL associated web sites agree to read and abide by the complete terms of this agreement.


Legal Disclaimers



  1. The LITL website does not constitute an attempt to practice medicine

  2. The content of the site is strictly protected and should not be copied and/or replicated without the express permission of a LITL agent

  3. Individuals should consult a qualified healthcare provider for medical advice and answers to personal health questions

  4. While the site attempts to be as accurate as possible, it should not be relied upon as being comprehensive or error-free

  5. LITL is under constant development and changes may be made in the articles, information, programs, and resources at any time

  6. The website reserves the right to change its disclaimer or privacy policy, so users should review these periodically


No medical advice.

The information posted here by LITL is not to be considered medical advice and is not intended to replace consultation with a qualified medical professional. We may answer and post medical questions solely on our own discretion. We do not have the resources or capability to answer all LITL visitor questions. In general, the questions we choose to answer are (in our opinion) of value to our readers. The answers to these questions should in no way be considered specific medical advice or a plan for disease management. Our goal is to provide sufficient information so that LITL visitors are able to become knowledgeable participants in their disease management plan and the general rare disease advocacy space. The primary responsibility of your disease management plan is with your treating physicians and you should only follow your treating physician's advice. DO NOT change/modify your disease management plan on your own without consulting your treating physicians.


No Warranties.

This website is provided on an "as is," "as available" basis without warranties of any kind, express or implied, including but not limited to, those of TITLE, MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE or NON-INFRINGEMENT or any warranty as to accuracy, timeliness, completeness or arising from a course of dealing, usage, or trade practice. No oral advice or written information provided by LITL or its contributors/employees or its affiliate organizations/partners shall create a warranty; nor shall members or visitors to the site rely on any such information or advice.


Disclaimer of Liability.

The user assumes all responsibility and risk for the use of this website. Under no circumstances shall LITL or its contributors/employees or its affiliated organizations or anyone else involved in creating or maintaining this website be liable for any DIRECT, INDIRECT, INCIDENTAL, SPECIAL or CONSEQUENTIAL DAMAGES, or LOST PROFITS that result directly or indirectly from the use or inability to use the website and/or any other websites which are linked to this site - or that result directly or indirectly from mistakes, omissions, interruptions, deletion of files, viruses, errors, defects, or any failure of performance, communications, failure, theft, destruction or unauthorized access.


In states which do not allow some or all of the above limitations of liability, liability shall be limited to the greatest extend allowed by law.


Online Conduct.

Visitors agree to use the website only for lawful purposes and are prohibited from posting on the website any unlawful, harmful, threatening, abusive, harassing, defamatory or obscene material of any kind, including, but not limited to, any material which encourages conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any applicable local, state, national or international law. This applies to any posting that could be termed as Sexual Harassment and or Discrimination. Although in the absence of a specific complaint the postings are not monitored for compliance with this provision, in an effort to discourage such conduct, please note that all postings in the Comments/Guestbook/Forums/Blogs/etc. will list that user’s name. LITL reserves the right to remove any comments that do not abide by the online conduct as proposed.


Link Disclaimer.

Links are provided only as an informational resource. Please be advised that many of the links provided are not on our servers and are not maintained by us or affiliated with any services provided by us. These links are provided simply as a means of supporting our partners, and it should not be implied that we recommend, endorse or approve of any of the content at the linked site(s), nor are we responsible for their availability, accuracy or content.


Disclaimer of Endorsement.

Reference to any products, services, hypertext link to the third parties or other information by trade name, trademark, supplier or otherwise does not constitute or imply its endorsement, sponsorship or recommendation by LITL or its contributors/employees or those of its affiliated organizations. They are for convenience only.


Living in the Light (“LITL”) Privacy Policy and Information:


We respect your privacy and towards that purpose, maintain our website by the following principles:

You do not need to disclose personal information to use the LITL website. No such information is obtained about you unless you choose to submit it to us. For example, if you email us your comments, that identifies your email address or if you fill in the web-contact form that may collect some relevant personal information. LITL’s authorized-individuals who access this information will do so for specific and narrowly defined purposes that are strictly and exclusively noncommercial and such purposes are required to have explicitly defined health information or health research enhancement goals.


We had made reasonable efforts to ensure that the information you may provide is confidential and not personally identifiable. You should understand, however, that we cannot guarantee that electronic transmissions via the internet are 100% secure from interception, and thus cannot guarantee the security and confidentiality of this information.


Except for authorized law enforcement investigations or other facially valid legal processes, we will not share any information we receive with any parties outside of LITL.


Copyrighted and Restricted Materials:


This site is controlled and operated by Living in the Light (“LITL”). The site was created to be useful and educational to our community members and promotional for LITL products, services and offerings. All materials on the site ("Online Materials"), including, but not limited to, text, graphics, names, logos, business information, trademarks, service marks, images, icons, photographs, biographies, illustrations, digital downloads, data compilations, software,  audio clips and video clips, are protected by copyrights and other intellectual property rights owned and controlled by LITL. No online material may be copied, reproduced, republished, modified, uploaded, posted, transmitted, distributed in any way, or otherwise used for any purpose without the express written permission of LITL. You may not add, delete, distort, or otherwise modify the contents on the site. Any unauthorized attempts to modify any online material, to defeat or circumvent our security features or to utilize the site for other than its intended purposes is prohibited.


The content on this website is provided to you free of charge as a convenience and for informational purposes only. LITL hereby grants to you a non-exclusive license to use this website solely for your personal and noncommercial use. Any unlawful use of this site or any use inconsistent with these terms and conditions is prohibited and will result in immediate and automatic termination of such limited license. Additionally, action will be taken against you to the fullest extent of the law.


No part of this website or the information contained here shall or may be considered professional advice and the user should not assume that there is any professional relationship that exists or is created. LITL is dedicated to providing quality information, but makes no claims, promises or guarantees about the accuracy, completeness, or adequacy of the information contained in or linked to this website or any of its associated sites and partners. As with any advice, medical, diagnostic or therapeutic, which must be tailored to the specific circumstances of each case, nothing provided herein should be used as a substitute for the advice of retained, competent medical professionals.


How Your Information Is Protected

This website uses standard industry security practices to protect your personal information including Secure Socket Layer (SSL) transmission technology for all sensitive information exchanges. This technology encrypts information you send us to avoid it being intercepted before reaching LITL’s secure HTTPS servers.

LITL follows generally accepted industry standards to protect the personal information submitted to it from unauthorized access or disclosure, both during transmission and once LITL receives it. However, no method of transmission over the Internet, or method of electronic storage, is 100% secure. Therefore, while LITL strives to use commercially acceptable means to protect your personal information, absolute security cannot be guaranteed. LITL assumes no liability for any disclosure of data due to errors in transmission, unauthorized third party access or other acts of third parties, or other acts or omissions.

Data Transfer and Storage

LITL is a Massachusetts corporation operated from within the United States. Accordingly, information collected by LITL will be stored in the United States. If you are accessing the Website from outside of the United States, you acknowledge and agree that your information will be received by or transferred to servers located within the United States and processed by LITL and its third party service providers.

Opting Out of Certain Communications

If you are no longer interested in receiving e-mail announcements and other marketing information from LITL, please e-mail your request to Please include your complete name, e-mail address and mailing address. Note that you may still receive transaction-related communications from LITL.

Resolution of Disputes

For purposes of any action or claim against LITL, this agreement shall be governed by and construed in accordance with the laws of the State of Massachusetts, exclusive of its choice of law rules, and you agree to submit to the exclusive jurisdiction of the state and federal courts sitting in the County of Hampshire in the State of Massachusetts and the courts having appellate jurisdiction over those courts, and waive any jurisdictional, venue, or inconvenient forum objections to such courts. Notwithstanding the foregoing, if you access or use the website from the European Union, for purposes of any action or claim against LITL this Agreement shall be governed by English law and you agree to submit to the exclusive jurisdiction of the English courts in relation to disputes arising in connection with this agreement. In the event that any of the terms and conditions are held by a court or other tribunal of competent jurisdiction to be unenforceable, those provisions shall be limited or eliminated to the minimum extent necessary so that these terms and conditions shall otherwise remain in full force and effect.



The above notice was reviewed on June 1, 2017 and is in force currently. In the event any changes are made to this notice, the amended notice will carry the date it was amended. In addition a link to the original notice will be provided. If there are any concerns regarding this notice, please email us at

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