Our community guidelines

ContactContact LondonCommunity Manager

Welcome to Contact’s online community – a place for people like you and families like yours.

We worked with community members to create some guidelines to help you feel at home here.

Who we are

Hi, I'm Alex_Contact and I'm the community moderator. I make sure everyone here feels comfortable and knows how to make the most of our community.

Chris_Contact is the community manager and helps make this a space where conversation can flourish.

We ask you to:

  • Be supportive and treat others in the way you’d like to be treated.

  • Respect each other’s privacy and keep conversations within the community.

  • Use the community safely. We have information on our website about support available if you need more urgent help, a diagnosis or an expert opinion.

  • Remember that everyone is different. What feels manageable for you might be really hard for someone else.

  • Tell Alex_Contact if anything makes you feel uncomfortable or worried. It’s best to do this privately rather than posting publicly. You can report a post by clicking on 'flag' and selecting 'report'.

  • Have a look at the topic guidelines before posting so you know what’s ok to post there.

  • Look after yourself. Writing about your experiences or reading other people’s thoughts can sometimes bring up unexpected emotions. If you need to take a break or step away from the community please do. Mind has some good information about looking after your wellbeing online.

  • Think about joining any relevant condition groups – just by signing up to a condition group, you’re helping others to find you and feel less alone.

  • Think about what you are comfortable sharing and avoid posting personal details (e.g. address or phone number) in the public community space.

  • Make your posts as easy to read as possible – avoid too many capitals or too much text speak.

  • Remember that it’s easy to misunderstand tone and meaning online – take a break before replying and report a post or message Alex_Contact if you feel upset or angry.

  • Use the ‘report post’ button to report any posts that you find worrying.

  • Use the feedback thread or contact a moderator if you have problems, ideas, thoughts or suggestions.

We ask you not to:

  • Give ‘expert’ advice or diagnosis – we can never get the full picture online and what worked for you might not be exactly the right solution for someone else. It’s usually more helpful to support people to get the answers they need from medical professionals or a range of sources.

  • Please don’t post anything racist, homophobic, sexist, transphobic or anything that discriminates against anyone with a disability.

  • Make personal attacks or criticise others. It’s ok to disagree but we all know how hard parenting can be and this is a space for positive support not judgement.

  • Criticise a named service or person – you could get into legal trouble.

  • Share identifiable images of children. It's ok to use their first name but please don't share their surname, location or, for example, a specific school uniform. Please don't share pics of other people's children either. Thank you.

  • Post any fundraising pages, petitions or commercial posts. If you have a request for research participants, please email [email protected] first.

  • We know that questions and discussions about puberty and sex will come up. But please don’t post inappropriate sexual content or innuendo – not everyone is comfortable with this.

  • We know everyone needs to blow off steam sometimes but please don’t swear at other community members.

  • Post about moderation decisions within the community. If you disagree with a decision and would like to discuss it, please email [email protected] or send Alex_Contact a private message. Although we are happy to explain our thought processes, a moderator’s decision is final.

  • Post or share images or descriptions about things that could be upsetting for others. It’s ok to talk about thoughts and feelings but please don’t share graphic images or detailed descriptions of abuse, neglect, violence, self-harm or suicide plans. If you need extra support, a moderator can help you find the right place.

We will:

  • Look at anything you have reported, read any private messages you’ve sent us and do our best to help.

  • Remove or edit anything that goes against these guidelines (we’ll try and let you know if we do that and why).

  • Try and make sure that everyone receives the responses and support they need.

  • Suspend anyone who regularly breaks the rules or who posts in a way that is unsafe for other community members.

  • Respect your confidentiality. We will only tell someone else what you share here if a child is at risk of harm, a vulnerable adult is at risk of harm, a person poses a serious risk to others or you are in immediate danger of serious harm and if we have enough information about who you are and where you live to help you get effective support. We also have to pass on information if a terrorist threat has been made or we have been ordered to share information with the courts.

We won’t:

  • We won’t be able to respond to messages or reports as quickly during evenings and weekends. You can help by letting us know if something makes you uncomfortable – this will help us respond faster.

  • At the moment we can’t offer expert support through the community – you can call our helpline for that.

  • We won’t check every message before it goes live – that would get in the way of your conversations. But this does mean we rely on you to let us know if something is worrying you.

  • We won’t usually read your private messages with other members – unless we have reason to believe that they are being misused.

For more info on how to get started, have a look at our FAQs.


  • Hi everyone, My son has DORV (Double Outlet Right Ventricle) - congenital heart disease and its a rare condition. He is eleven years old and after many years of living a fairly ordinary life he has become more and more tired recently and has been told he needs another op (they are 3 D printing his heart to look at options would you believe). My problem at the moment is he is rarely going to school as he is too tired or irritable or stubborn to go. i have seen the SENCO and he promised to post any missed homework on line but apart from that he is not catching up on any schooling he is missing. Sometimes we dont know if he is really ill or if he just doesnt fancy going so its a constant battle to get him there or to know if he should stay home. Does anyone else struggle with getting their child to school?

  • This is rare condition - this is only one of a couple of articles i have found https://www.bhf.org.uk/news-from-the-bhf/news-archive/2013/october/joshs-story

  • Hi @suebedoo and welcome. You might find it helpful to post your comment in our 'Education' topic - more people might see it that way:
    It would also be fantastic if you joined our DORV condition group and posted your intro and info there - http://community.cafamily.org.uk/group/109-double-outlet-right-ventricle-dorv
    That way, if/when new people who have a child with DORV join, they will be able to find and connect with you and see the info you share.
    Take good care,
    Alex (CAF_mod)

  • trippmtrippm Member

    Hi I am new here .
    I would like to talk to other parents of kids or teenagers etc who are affected with Fravile X Syndrome.

  • Chris_ContactChris_Contact Community Manager

    Hi @trippm - welcome to the community. It looks like you have already joined our condition group for Fragile X - but you might also find it helpful to start a new discussion in our Anything Goes section - https://community.cafamily.org.uk/categories/anything-goes-general-chat - that's where lots of people look first at the moment.
    Do let us know if you have any questions,
    Take good care,
    Alex (CAF mod)

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