The purpose of the Information Point website and the Information Point on Facebook, is to provide information, support and awareness, to anyone affected by CNM / MTM. Both the website and the Facebook group aim to provide a safe environment where people can cease to feel isolated or judged.

Our Facebook group has an open door policy, meaning that anyone affected by any form of the condition, whatever their age and wherever they are in the world are welcome to join our community, meet and support others and to learn about the condition. All members of the Facebook group are welcome to add links, photos, videos and to take part in discussions - please do not be afraid to do so. Members are also invited to share their story on this website, to contribute to our newsletters, events and accomplishments pages, suggest links for our resources pages and any member may request that a loved one be included on our In Memory page.

With particular reference to the Facebook group, it should be understood that personal attacks, flaming (posts which are designed to personally berate or insult another), trolling (deliberately posting derogatory, inflammatory comments / threads in order to bait other users into responding) and offensive messages are not permitted in the group.

The moderator understands that occasionally, conflicts may arise when people voice opinions but please be courteous when disagreeing with others. Debating an opinion is acceptable behaviour, however criticism against the originator of the opinion is not allowed, simply because you disagree with the opinion being voiced. The group moderator will remove offensive messages and members who violate these rules will be permanently removed from the group.

To sum up, please remember the Facebook group is a public discussion board, so please act like you would if you were in a public place. The moderator reserves the right to decide what is and what isn't objectionable, this may include any material posted on the group page that is knowingly false and / or defamatory, misleading, inaccurate, abusive, vulgar, hateful, harassing, obscene, racist, sexist, profane, sexually oriented, threatening, invasive of a person's privacy or that otherwise violates any law or encourages conduct constituting a criminal offense.

Think of these rules as a forewarning and if you break them, you're taking your membership of the group into your own hands. Please note, these are the rules of the Information Point on Facebook, they are not rules for being a member of Facebook. Please visit Facebook for details of their terms.

Where members make friendships as a result of being a member of the group, individuals should use their own good judgement about the amount of information they provide about themselves. Remember you can control how you share your information and who is able to contact you via your privacy and application settings.

Finally, the Information Point was set up to share information and bring our rare community together. It should be understood that the presence of information either on the website or the Facebook page is included in the spirit of sharing relevant information and making it readily available to anyone who has need of it. Such information should not in any way be taken to imply endorsement or approval and links are included as areas of possible interest only - the Information Point cannot vouch for the accuracy or suitability of information you may find on them, or on sites linked to them.

The Information Point is published solely as a service for interested parties. Any decisions on medical treatments, interventions, courses of action, etc should be made by the appropriate family members in consultation with the available literature and qualified medical professionals. Good sense should always prevail. The Information Point assumes no responsibility for the use of the information, observations or opinions presented.