Disclaimer & Legal Notice

This website is presented by Cystinosis Network Europe, Germany, for the purpose of disseminating information free of charge for the benefit of the public. Cystinose Network Europe, Germany, monitors the quality of the information available on this website and updates the information regularly.
However, Cystinosis Network Europe, Germany, does not guarantee, and accepts no legal liability whatsoever arising from or connected to, the accuracy, reliability, currency or completeness of any material contained on this website or on any linked site. Cystinosis Network Europe, Germany, recommends that users exercise their own skill and care with respect to their use of this website and that users carefully evaluate the accuracy, currency, completeness and relevance of the material on the website for their purposes. This website is not a substitute for independent professional advice and users should obtain any appropriate professional advice relevant to their particular circumstances. The material on this website may include the views or recommendations of third parties, which do not necessarily reflect the views of Cystinose Network Europe, Germany, or indicate its commitment to a particular course of action.

Links to external websites
This website contains links to other websites that are external to Cystinose Network Europe, Germany. Cystinose Network Europe, Germany, takes reasonable care in linking websites but has no direct control over the content of the linked sites, or the changes that may occur to the content on those sites. It is the responsibility of the user to make their own decisions about the accuracy, currency, reliability and correctness of information contained in linked external websites.
Links to external websites do not constitute an endorsement or a recommendation of any material on those sites or of any third party products or services offered by, from or through those sites. Users of links provided by this website are responsible for being aware of which organisation is hosting the website they visit.

Security of the Cystinose Network Europe, Germany, website
Cystinose Network Europe,  applies a range of security controls to protect its website from unauthorised access. However, users should be aware that the World Wide Web is an insecure public network that gives rise to a potential risk that a user’s transactions are being viewed, intercepted or modified by third parties or that files which the user downloads may contain computer viruses, disabling codes, worms or other devices or defects.

Cystinose Network Europe, accepts no liability for any interference with or damage to a user’s computer system, software or data occurring in connection with or relating to this website or its use. Users are encouraged to take appropriate and adequate precautions to ensure that whatever is selected from this site is free of viruses or other contamination that may interfere with or damage the user’s computer system, software or data.

Social Media Policy
Cystinose Network Europe, engages in social media to promote discussion and debate on rare disease issues. We welcome feedback and suggestions, and endeavor to respond to messages.

We ask that the conversation on our pages is tolerant of other people’s views.

Here are the basic guidelines for our social media pages:
• All discussions and material on our sites should be family friendly and respectful of a diversity of
• Posts and comments should not vilify or attack individuals on the basis of personal characteristics such    as race or religion.
• Posts and comments should be relevant to the topic under discussion.
• Have your say, but do not spam our pages with repeats of the same information.
• Advertising is not allowed.
• Posts that contravene the above guidelines will be removed, and repeat offenders could be banned.
• If you follow us on Twitter, we will not automatically follow you back. This is to discourage the use of
direct messaging and spam.
• Cystinose Network Europe, a chapter of Cystinose Selbsthilfe e.V., Germany, encourages ‘friends’ and
‘followers’ on its pages, but this does not imply endorsement of any kind.

Our social media accounts are managed by the Web Team. If you would like to contact them please email at csproedt@leben-eben.com.