Welcome to the Cystinuria Support Community for support of cystinuria!
We’re very glad you have chosen to be a part of our community. The Cystinuria Support community - offered by the Cystinuria UK and HealthUnlocked (HU) - supports individuals affected by cystinuria. Whether you are an individual who has been diagnosed, a care-partner, family member, or friend, we hope this community is a safe and supportive place for you to share your experiences and find information and support.
This community is moderated by Cystinuria UK and HealthUnlocked.
HU Community Guidelines: support.healthunlocked.com/...
Below are the Cystinuria Support Community Guidelines, which are aimed at creating and maintaining a safe and supportive community for all of our members. Many of HU’s guidelines are repeated here.
Professional Health Information:
The Cystinuria Support Community strives to provide useful, up-to-date information on matters of concern to individuals with cystinuria and other members of the cystinuria community. The information posted on this site should not be used as a means of diagnosis, determining treatment, nor replace the relationship between you, your doctors and other healthcare professionals. For diagnosis and treatment options, you are urged to consult your physician.
The Cystinuria Support Community is a safe, supportive, informative, and friendly community for people affected by cystinuria. Your participation in this community should be with respect, honesty and in the spirit of supporting and learning from fellow users.
Please note that while Cystinuria UK is an organisation based in the United Kingdom, members may be located worldwide. As such, details on approved medications, treatment protocols, healthcare, insurance, and other related topics may differ and should always be verified depending on your specific location.
Posting Content (Posts/Questions/Replies/Private Messages):
Content posted by individual members does not represent the views of the Cystinuria UK or HealthUnlocked.
Posting content on this community is taken as your agreement to post information that is true and accurate to the best of your knowledge, and is primarily drawn from personal experience. You are encouraged to post content about your own experience with cystinuria (or that of a loved one), ask questions, and offer support and advice.
Content should never be abusive, derogatory, sexually explicit or suggestive, or deliberately misleading. If you believe someone else’s content violates this rule, please report it via the “Report Abuse” option or via the “Feedback” button. Content that is felt to violate this policy will either be edited or removed. All feedback reports are read by moderators and it is their judgement on what action, if any, is taken.
Neither Cystinuria UK nor HealthUnlocked is responsible for any offence or injury that a member may draw from another member’s content.
Any content posted on this community can be read, used, reproduced, and cited by other users of the site. You have the option to delete content you posted.
When you post third-party information, such as information about new treatments, you are asked to provide references and links to sources wherever possible. Please ensure links are to a reputable site.
Content posted on this community is moderated by Cystinuria UK and HealthUnlocked. Moderation occurs only after content is posted.
Moderation helps maintain a safe, positive environment for all members of the community. Content may be edited or removed to ensure that the community remains supportive and responsive for all members.
The community is open 24 hours a day, 7 days a week. Moderation occurs after posting and primarily between the hours of 9 AM and 5 PM GMT Monday through Friday.
Please note that Cystinuria UK does not endorse or recommend any specific products, services, therapies, or activities mentioned by any third party (individual or company).
In this community, there may be discussions of health-related issues and sharing of personal information.
Please note that the Cystinuria Support Community is an open site, meaning that any posts are searchable by internet search engines and can be shared via social media platforms. The default setting of posts allows them to be visible to individuals who are not members of the community. If you would rather your content was not searchable, you can change the visibility of your post by selecting "Only followers in my community" before clicking submit. This will result in only the post title and first line of text being visible to those who are not members of the community. However, doing this will limit the number of people who will find and benefit from the information you have shared. We suggest members leave posts open for everyone to find if they are comfortable doing so to ensure more people find communities and benefit from the wealth of information on HealthUnlocked.
For your own safety, you should not disclose personal information such as your full name, email address, home address, telephone number, or any other information which could directly or indirectly identify you.
For more information on general online safety guidelines please visit: ico.org.uk/for-the-public/o...