Welcome to Living With KC

Living With KC manages a variety of social media channels (Twitter, Facebook, Instagram) and strives to create an informative and supportive community for people living with keratoconus. The goal of these channels is to provide followers with a safe place where they can share information and have meaningful conversations.

In other terms, we welcome the opportunity to hear your personal stories and experiences with keratoconus. To do so, we’ll do our best to provide useful information and discuss relative topics that are important to you, listen to your feedback, and answer your questions.

At times, it may seem like our posts and interactions are limited. Living With KC is sponsored by Avedro, a privately held pharmaceutical and medical device company with approved and development-stage products, so we must adhere to specific ethical, legal, and regulatory standards that are unique to our healthcare industry. This means we are unable to engage in certain topics or discussions.

To ensure that the Living With KC communications are consistent with our mission, here are some simple guidelines and disclaimers that explain how we use our social media channels. We hope you will find these useful for understanding the rationale behind the Living With KC resources and responses.

Community Guidelines

At Living With KC, we welcome your interactions, mentions and replies and we’ll do our best to respond quickly to any and all questions, comments, or feedback. However, please understand that at times our posts and interactions may be limited or delayed, and in some cases we will be unable to respond.

These channels will contain the opinions and views of other users. Although we are moderating the Living With KC channels to help ensure that users’ posts comply with these guidelines, Living With KC and Avedro are not responsible for the accuracy or reliability of any comments or materials posted by our followers.

We work in a regulated industry and we ask that you refrain from posting comments containing the following information:

  • Certain financial, legal, and regulatory issues related to our business;
  • Unsubstantiated claims about, or discussion of “off-label” or unapproved/non-directed uses of our or other products;
  • Profanity, defamatory, libelous, offensive, abusive, discriminatory or demeaning content (including images, videos and links);
  • Disparaging, threatening, violent, or illegal behavior;
  • Health or medical advice;
  • Information that is false, inaccurate or misleading;
  • Protected/Personal Health Information (PHI). We are committed to the KC community, but if you have a question directly related to your condition, the use or availability of our treatment, clinical trials, etc., we ask that you visit: livingwithkc.com or www.avedro.com;
  • Proprietary, confidential, sensitive, or nonpublic information.

We ask that your posts follow Facebook’s posting guidelines and Terms of Use.

Our goal is to be a valuable community resource for people or family members and friends who are living with keratoconus. We encourage engagement that adds value to this mission.

By participating in and viewing conversations on the Living With KC channels, you are promising that your posts and comments comply with these guidelines and also refrain from using any of the restricted content listed above. However, we reserve the right to remove any posts or comments that we believe do not comply with our specified guidelines. Please be aware that followers who continuously and repeatedly violate the above list may be removed from our follower list and the user would no longer be able to receive our news, comment on our posts, or message/contact us.


  • Personal or public accounts that the Living With KC channels follow or are followed by do not indicate an endorsement of the account, their products and services, or the content they publish.
  • Living With KC may provide links or references to other sites as part of its content. However, Living With KC and Avedro claim no responsibility for the content from said sites and shall not be liable for any damages or injuries arising from the shared content. Any outside links or content are provided as merely a convenience to the users of this platform.
  • Avedro reserves all rights relating to the Living With KC channels including, but not limited to, all rights to add, remove or modify any content or material posted on the account, discontinue the account, accept/reject those who may wish to follow the account and respond to any questions or comments addressed to the account.
  • No other entity other than Living With KC, Avedro, and their authorized users may represent Avedro. If any electronic medium/asset is created that falsely represents the company, products, employees, etc., appropriate legal action will be taken by Avedro.

Repurposing Posts

By posting on one or more of our social media channels, you understand that your posts, or any ideas contained in them, may be freely used by Living With KC and Avedro in any way, including on our website, social media pages, or in our business. Please do not submit any ideas, materials, or information that you wish to keep confidential or for which you expect to receive any type of compensation. In addition, when you post on any of our social media channels, your name and social media handle will be visible and associated with your post. If we decide to re-use your post elsewhere, your name and handle may be included there as well.

Medical Side Effects/Adverse Events

If you believe that you have experienced any medical side effects or reactions from the Avedro cross-linking procedure, you should consult your physician or other healthcare professional immediately. You should also report these side effects to Avedro by calling 1-844-528-3376, Option 1 or you may contact the U.S. Food and Drug Administration (FDA) directly at 1-800-FDA-1088.

We suggest sharing as little personal information as possible on our social media channels, specifically avoiding any data concerning your personal health. However, if you decide to include a post detailing any side effects, Living With KC/Avedro may contact you to find out additional information. Posts of this nature may need to be removed from our channels, due to legal requirements.

We do not aim to store or use your profile unique ID, email or other personal details. However, in case of any adverse events or product issues you report to us, we’d need to store and use identifying information about you. This information is required to be submitted to Avedro and/or regulatory authorities.

Please note that Facebook also has access to information you share with us. For more details read the Facebook Privacy Policy.

Thank you for reading and being a part of the Living With KC community!