The purpose of this policy is to explain how we use social media and online communities, our posting guidelines and moderation policy for online user-generated content.
We use many social media channels, networks and online communities to communicate with the people we support and the general public. They are also available to give anyone affected by either ADPKD or ARPKD (Autosomal Dominant and Autosomal Recessive Polycystic Kidney Disease) the opportunity to share experiences, ask questions and get mutual support.
Some of the messages that we – the PKD Charity - post will be informational; others will contain general supportive advice.
These supportive messages are not meant as a substitute for professional medical advice. You must consult your GP, hospital consultant, pharmacist or other allied health and social care professional if you have any concerns about your health or social care.
We can only support people who live in the UK.
Where relevant, we will provide a link to information materials. All information that we link to will either be on our website www.pkdcharity.org.uk or a reliable third party site that we have verified. Where relevant, the information on the PKD site will be accredited by the Information Standard or undergoing formal review.
We are not responsible for the advertising content on social media websites and online communities and do not choose which adverts appear on its page.
We accept no responsibility for social media websites and online communities being unavailable.
We publish a set of ‘posting rules’ on each channel, platform, network, community or forum about messages posted by members or participants. We call these messages and comments ‘user-generated content’. We are not liable for user-generated content.
Below we set out our overall posting guidelines and our moderation policy for user-generated content; followed by links to the different social media channels and communities we use.
When you participate in social media, such as Facebook and Twitter, or join online communities, such as HealthUnlocked and Facebook, you will be able to post messages, ask questions, read and share personal stories and experiences, and receive friendly encouragement written by others in similar situations.
You are responsible for what you write.
Don’t make assumptions about other people’s experiences; everyone has different coping mechanisms and tolerance levels. Remember that people may be newly diagnosed, experiencing health problems, anxious about progression of PKD, have upcoming medical appointments or are awaiting dialysis or transplant.
Speak your mind freely, but please be sensitive to the feelings and opinions of others. You might not always agree, but you can agree to disagree in a peaceful manner.
Please try to be ‘gentle’ but honest as your personal experiences may come across as scary and/or 'negative'.
Be aware of offering advice – don’t make statements about what others should and shouldn’t do, and don’t judge others and the way they do things.
However, people affected by PKD can also live full, active lives, sometimes with few symptoms, so please do write about your positive stories as well.
It is fine to share your experiences at your local doctor’s surgery or hospital. However, if you have had negative experiences or wish to be critical of a particular doctor’s surgery, hospital department or individual member of staff, please do NOT name them. You may find yourself liable to legal action and the PKD Charity will take no responsibility for this.
Do not post messages or comments that:
PKD Charity staff and trusted volunteers administer the social media channels and communities. They act as moderators and are also encouraged to participate in the comments and message streams where appropriate, using their own name, and signalling that they are commenting in an official capacity.
Currently, we do not pre-moderate user-generated content before it goes ‘live’. However, all the channels and communities are monitored regularly.
We will delete any comments or messages that do not meet our posting guidelines above.
This is not about censoring your views. The aim is to make sure that all user-generated content relates to the particular subject being discussed. Moderation will not be used to suppress legitimate, reasoned discussion.
We will ban members who we feel do not follow the posting guidelines or rules.
Where possible and in response to any requests, we will explain why we banned you or why your contribution did not fit with the guidelines, with suggestions of how the content could be re-phrased so that it can appear on the forums.
We make no commitment to respond to every individual comment, message, post or tweet.
This group was established over 10 years ago and has nearly 700 members, who are very caring and well-informed.
Started in London in 2010, HealthUnlocked is now a large social network, linked to NHS England.
We have two communities:
We have one Facebook page:
Polycystic Kidney Disease (PKD) Charity UK
This is the charity's public page, open to anyone to visit, to find out about what we do and who we help.
We post details of events, campaigns and fundraising, and also share stories about people affected by PKD.
You may ask questions on this page, but be aware that this is a public site, so be careful not to disclose personal or sensitive information about yourself and your family.
If you need a place to talk about things in confidence, to share your experiences or to ask for advice or information on personal and family matters, please visit our closed Facebook Groups:
There are a number of other Facebook groups that we contribute to, but these have their own policies and posting guidelines.
We only ‘like’ other Facebook pages or groups which are non-commercial and related to PKD or related matters - being ‘liked’ by the PKD Charity doesn’t imply endorsement of any kind.
We use the following Twitter account:
www.twitter.com/pkdcharity or @PKDCharity
To broadcast news and information, publicise fundraising events (our own or supporters), raise awareness.
We may follow you back if you follow us on Twitter - being followed by us doesn’t imply endorsement of any kind.
On Twitter, we will retweet if the request:
Retweets from PKD Charity UK’s Twitter accounts does not imply endorsement of any kind. We might also retweet (without being asked) those tweets whose messages are considered relevant to the charity’s policies.
We have a Website Linking Policy for the PKD Charity website and these principles are applied to all social media channels, networks and online communities that we use or contribute to.
We do not link to:
Do not post anything you don’t have the right to publish or which violates copyright. This also includes copying the PKD Charity logo without permission.
We reserve the right to modify or alter our policy and guidelines at any time.
How to print this information: click the printer button top right for a printer-friendly version. However, if you don't have access to a printer and would like a printed version of this factsheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 10.00am-4.30pm) or email
PKD Charity Helpline: The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
© PKD Charity 2014 | www.pkdcharity.org.uk
Registered charity No 1160970/ SC047730