community brings together people from a variety of backgrounds, and the community is strengthened by the diversity of its members. In order to provide a safe, empowering and educational environment for all users, we have established the following Code of Conduct:
To become a member, CysticLife requires that you are either (a) a diagnosed patient with Cystic Fibrosis, (b) a caregiver for a Cystic Fibrosis patient, (c) A family member of a Cystic Fibrosis patient, (d) a friend of a Cystic Fibrosis patient, or (e) a guest as authorized by CysticLife, LLC.
Children under the age of 13 are prohibited from registering as members. By registering as a member you represent that you are age 13 or older.
Respect the Opinions of Others:
Each member brings a unique perspective to the community, resulting in a wide variety of opinions, information, and statements. Each member deserves the opportunity to voice his or her opinions openly and without fear of harassment or persecution.
Truthful and Accurate Information:
It is the expectation of CysticLife that any and all information provided by users is, to the best of the users’ knowledge, truthful and accurate.
Posted content that is abusive, uses defamatory/obscene language, copyrighted yet not attributed correctly to the original author, or contains sexually explicit images and/or language is prohibited. The appropriateness of posts is at the sole discretion of CysticLife. CysticLife reserves the right to delete any and all material deemed inappropriate.
Solicitation and Commercial Use:
The content and information contained on CysticLife.org is for the personal use of individual members only and may not be used in connection with any commercial endeavors. Organizations, companies, and/or businesses may not become members. No member is permitted to solicit money, services, or other resources on CysticLife.org. Solicitation will result in the permanent suspension of the member’s account.
Use of Site by Members and Non-Members
You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes. You may not post content on the Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the Site unavailable through denial-of-service attacks or similar means. You shall not use contact information provided by members, or collect information about our members, to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your membership account to take such actions.
Links to Other Websites
CysticLife.org may contain links to other websites that are not under the control of CysticLife. The inclusion of any link does not imply endorsement by CysticLife of such site and CysticLife is not responsible for the content of such linked sites.
All members are expected to monitor the site for misconduct. Please notify the site immediately at email@example.com
if there is content or behavior that violates the Code of Conduct.
By using CysticLife.org you are consenting to the Code of Conduct. CysticLife.org reserves the right to change any or all of the Code of Condent effective immediately upon posting the updated Code on the site.
FAILURE TO COMPLY WITH THE CODE OF CONDUCT WILL RESULT IN DELETED INFORMATION, TEMPORARY MEMBERSHIP SUSPENSION, OR PERMANENT MEMBERSHIP SUSPENSION. RECOURSE FOR VIOLATIONS IS AT THE SOLE DISCRETION OF CYSTICLIFE.
Use of Personally Identifiable Information:
The information provided by a member while using the site and creating a profile, such as name, date of birth, email addresses, gender, hobbies and interests, CF numbers (such as weight and PFTs), medications and treatments may be used by CysticLife.org for the purpose of administration, expanding the site offerings and understanding the demographics and psychographics of the membership base.
No Release of Individual Information to Third Parties:
CysticLife.org will not release any personal information to third parties with the exception of the following reasons:
The release of information is required by law or is pertinent to judicial or governmental investigations or proceedings.
You have asked a question that can only be answered by an expert or medical doctor outside of CysticLife.
Member communications suggest possible harm to others or to the individual.
Release of Aggregate Information to Third Parties:
CysticLife reserves the right to release aggregate information about the member base to third parties. This information will be released at the discretion of CysticLife, LLC.
Other Security Issues
CysticLife cannot guarantee the identity of any other members with whom you may interact in the course of using the Site or who may have access to information you have posted. Additionally, we cannot guarantee the authenticity of any data that members may provide about themselves.
Use of Member-Provided Email Addresses
CysticLife will not release the email addresses of any member for any reason. It is used solely for the purpose of CL staff to get into contact with the membership. CysticLife will send members emails alerting the user of recent activity on their account. CysticLife also reserves the right to contact members at the member provided email address with important information regarding the site, the organization, and CL’s supporters.
Updating and Accessing Information:
If you would like to inquire about the information we have on file for you or update information previously provided, contact us at firstname.lastname@example.org
The information on CysticLife.org is member generated content, written by ordinary people, and is intended to be used for educational and community support purposes only. A majority of the information has not been written by medical doctors or researchers specializing in Cystic Fibrosis care. The content of the site should not be used for the purpose of medical diagnosis, treatment, or in place of doctor provided instruction.
Medical advice should only be taken from your CF Center or a health care professional, and no information should be used from CysticLife.org without the permission of your medical doctor. The medical needs and treatments for each individual is different and you should consult your doctor before using any information found on CysticLife.org.
CysticLife.org and the authors of the information posted are not responsible for any damage which may result from using information posted on this site. Always consult your doctors or medical center when determining which course of treatment is best for you.
If you think you may have a medical emergency, call your doctor or 911 immediately. CysticLife does not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on the Site. Reliance on any information provided by CysticLife, by persons appearing on the Site at the invitation of CysticLife, or by other members is solely at your own risk.