PKD Exercise Programme

Exercise programme for everyone living with PKD

Available on the Kidney Beam online platform

Click here to start the programme

Introduction

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.

How we use social media and online communities

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.

Posting guidelines

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:

• Incite hatred on the basis of race, religion, gender, nationality or sexuality or any other personal characteristic
• Are off-topic or unrelated
• Are disrespectful, malicious or offensive
• Could constitute a personal attack on a person’s character
• Impersonate or falsely claim to represent a person or organisation
• Are party political
• Include swearing or obscenity
• Are illegal – including libel or breaking copyright
• Could be considered spam
• Contain personal information like telephone numbers, address details, etc
• Advertise commercial activity or make requests for donations or money, unless agreed in advance with PKD Charity UK

If you have any questions or concerns about posting, please contact us by emailing [email protected]

Moderation policy

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.

Links

Yahoo Groups

https://uk.groups.yahoo.com/neo/groups/PKD_uk/info
This group was established over 10 years ago and has nearly 700 members, who are very caring and well-informed.

HealthUnlocked communities

Started in London in 2010, HealthUnlocked is now a large social network, linked to NHS England.
We have two communities:
For ADPKD
https://healthunlocked.com/pkdcharity-autosomaldominant

For ARPKD
https://healthunlocked.com/pkdcharity-autosomalrecessive

Facebook

We have one Facebook page:
Polycystic Kidney Disease (PKD) Charity UK
https://www.facebook.com/pkdcharity
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:

• PKD Charity UK
  https://www.facebook.com/groups/pkdcharityUK/
  For anyone in the UK affected by polycystic kidney disease (PKD).
• PKD in young people
  https://www.facebook.com/groups/pkdinyoungpeople/
  A group for young people with PKD
• Parents of children with PKD
  https://www.facebook.com/groups/Parentsofchikdrenwithpkd/
  For parents who have children with PKD - mainly for those whose children have or may have ADPKD although ARPKD parents are also welcome.
• PKD North West
  https://www.facebook.com/groups/NorthwestPKD/
  For people based in the NW of the UK, who are interested in forming a regional support group

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.

Twitter

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:

• is to publicise an event or activity the follower is undertaking for charity purposes
• is to publicise a message that may be of interest to its followers.

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.

Website linking

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:

1. Sites that are judgmental towards any individuals or groups of individuals.
2. Sites that contain illegal, offensive or misleading information.
3. Sites promoting unproven advice, therapies or products.
4. Sites that charge for access.
5. Sites that have unethical values.
6. Sites that offer cures or treatments for polycystic kidney disease.

Copyright

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 [email protected]

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.

Please send suggestions for improvement to [email protected]

© PKD Charity 2014 | www.pkdcharity.org.uk
Registered charity No 1160970/ SC047730

Privacy notice

• About Us

  The Polycystic Kidney Disease Charity (“the Charity”) is a registered charity in England and Wales (1160970) and Scotland (SC047730); and a company limited by guarantee registered in England and Wales under number 9486245. Our full contact details are below.

• What does this Privacy Notice cover?

  This Notice explains how we use your personal data: how it is collected, how it is held, and how it is processed. It also explains your rights under the law relating to your personal data.

• What is Personal Data?

  Personal data is defined by the UK General Data Protection Regulation (UK GDPR), tailored by the Data Protection Act 2018 (the “GDPR”) as any information relating to an identified or identifiable natural person. In simple terms, this means any information that enables you to be identified.

  Personal data covers obvious information such as your name and contact details, but it also covers less obvious information such as identification numbers, electronic location data, and information specific to your physical, physiological, genetic, mental, economic, cultural, or social identity.

• What are your Rights?

  Under the GDPR, you have the following rights, which we will always work to uphold:

  • The right to be informed about our collection and use of your personal data. This Privacy Notice should tell you everything you need to know, but you can always contact us to find out more or to ask any questions.
  • The right to access the personal data we hold about you.
  • The right to have your personal data rectified if any of your personal data held by us is inaccurate or incomplete.
  • The right to be forgotten, i.e. the right to ask us to delete or otherwise dispose of any of your personal data that we have.
  • The right to restrict (i.e. prevent) the processing of your personal data.
  • The right to object to us using your personal data for a particular purpose or purposes.
  • The right to data portability. This means that you can ask us for a copy of your personal data held by us to re-use with another service or business in many cases.
  • Rights relating to automated decision-making and profiling. Note that however we do not use your personal data in this way.

  For more information about our use of your personal data or exercising your rights as outlined above, please contact us using the details below.

  You can obtain further information about your rights from the Information Commissioner’s Office or your local Citizens Advice Bureau.

  If you have any cause for complaint about our use of your personal data, you have the right to lodge a complaint with the Information Commissioner’s Office. The Charity is registered with the Information Commissioner, Number Z9468678. The Charity is also registered with the Fundraising Regulator.

• What Personal Data do we collect?

  We may collect some or all of the following personal data (this will vary according to your relationship with us):

  • Name
  • Date of birth
  • Gender
  • Address
  • Email address
  • Telephone number
  • Business name
  • Job title
  • Profession
  • Payment information
  • Employment details
  • Information about your preferences and interests, such as fundraising or dietary needs for an event
  • Online identifier (IP address)

  The Charity does not collect special category or sensitive data as a matter of course. However, individuals may on occasion supply health-related information in relation to delivery of services by the Charity. For example, an individual needing befriending may share such information to enable the Charity to ‘match’ them to a volunteer; or an individual may share medical information that will help the Charity to liaise directly with a healthcare professional or similar on their behalf. The information is retained only as long as is necessary and is processed solely for this purpose.

• How do we collect your Data?

  There are several ways we may collect information about you. These include:

  • When you provide it to us by getting in contact (phone/email/web form/via social media)
  • When you subscribe to receive our newsletter (electronic or postal) or place an order with us for products or services
  • When you register for and/or attend a Charity event

  We do not record phone calls that you make to us. However, if you leave a voicemail, the message is stored in an audio file. After we have answered your query, we will process any personal data in accordance with our privacy and retention policies, outlined below.

  If you send us an email, we will process any personal data in accordance with our policies, and to respond to your message.

  We sometimes use a form on our website to collect information. We delete the information after we have responded to any message and/or processed your personal data in accordance with our policies.

  If you send us a message via social media, your message will be stored by the social media platform in accordance with its own privacy policy.  If the message contains your personal data, we will process this in accordance with our own policies.

  We use a third party company, CharityDigital, to collect your personal data for the purpose of sending you information and marketing communications by email. See below for more information about how your data is stored securely.

  We use a third party company, Eventbrite, to collect your personal data when you register for an event with us. See below for more information about how your data is stored securely.

  We may also collect information about you if you consent to the use of cookies when using our website. For example, we use Google Analytics to collect information from our website to help us analyse how many visitors use the site and what pages they read. This information does not directly identify you, the visitor, and we don’t allow Google to try to find out your identity.

• How do we use your Personal Data?

  Under the GDPR, we must always have a lawful basis for using personal data. This may be because the data is necessary for our performance of a contract with you, because you have consented to our use of your personal data, or because it is in our legitimate interests to use it. We will use your personal data for one of the following purposes:

  • Internal record keeping.
  • Maintaining a record of Gift Aid Declarations for HMRC.
  • Providing our services to you.
  • Providing goods that you have purchased.
  • Personalising and improving services for you.
  • Communicating with you. This may include responding to emails or calls from you.
  • Supplying you with information by email AND/OR post that you have opted-in to (you may unsubscribe or opt-out at any time by contacting us using the details below or clicking Unsubscribe in relevant emails).
  • Carrying out research and getting feedback.
  • Statistics reporting.
  • Evaluating website performance.

  With your permission and/or where permitted by law, we may also use your personal data for marketing purposes, which may include contacting you by email AND/OR telephone AND/OR text message AND/OR post with information, news, and fundraising appeals.

  We will not send you unlawful marketing or spam. We will always work to fully protect your rights and comply with our obligations under the GDPR and the Privacy and Electronic Communications (EC Directive) Regulations 2003, and you will always have the opportunity to opt-out.

• How long will we keep your Personal Data?

  We will not keep your personal data for any longer than is necessary in light of the reason(s) for which we first collected it. The table below shows how long we will keep your personal data. The retention period is determined by the type of data.

  The Charity may hold information on individuals under 16 but only with the express permission of parents/guardians. We will review the retention period schedule every 3 years.

  Description	Type of Data	Purpose of Data	Retention Period
  Gift Aid Declarations and Associated HMRC Schedules	Name, address, postcode	Claim Gift Aid on donations	No longer than the end of the tax year following 7 years from the last donation.
  Supporters	Name, address, contact details, interests; online identifier	Provide updates on activities and promote fundraising	Indefinitely, in accordance with GDPR.
  Donors (fundraisers)	Name, address, contact details, fundraising amount; online identifier	Record donations for accounting purposes; maintain ongoing contact	No longer than the end of the tax year following 7 years from the last donation. In the case of legacies, no longer than the end of the tax year 7 years after the legacy is received.
  Beneficiaries, including delegates at education days	Name, address, contact details, sensitive data (medical, genetic); online identifier	EnableProvide support and updates on activities	Indefinitely, in accordance with GDPR.
  Trustees	Name, address, contact details; DOB; nationality; bank details	Legal	As required by the Charity Commission and Companies Act
  Volunteers	Name, address, contact details; bank details	Management and governance; safeguarding	Indefinitely, in accordance with GDPR
  Healthcare Professionals	Name, address, contact details, speciality	Provide updates and engage	Indefinitely in accordance with GDPR
  Survey respondents	Online identifier; and sometimes personal data	Gather feedback	3 years
  Photo/video permissions	Name, address, contact details	Case studies, PR. NB: some permissions may refer to children under 16 years but these are only held with the express permission of parents/guardians.	Indefinitely, in accordance with GDPR
  Contractors & Employees	Name, address, contact details, bank details	Contractual	As determined by accounting and HR legislation
  Competitions, raffles etc	Name, address, contact details	Informing, clarifying	5 years
  General enquiries	Name, address, contact details, online identifier	Provide information and signpost to other resources	2 years

• How and where do we store or transfer your Personal Data

  We will aim to store your personal data in the UK OR within the European Economic Area (the “EEA”). The EEA consists of all EU member states, plus Norway, Iceland, and Liechtenstein. This means that your personal data will be fully protected under the GDPR or to equivalent standards by law.

  However, due to the global structure of the internet and use of cloud servers, we may store or transfer some or all of your personal data in countries that are not part of the European Economic Area (the “EEA” consists of all EU member states, plus Norway, Iceland, and Liechtenstein). These are known as “third countries” and may not have data protection laws that are as strong as those in the UK and/or the EEA. This means that we will take additional steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR including:

  • Obtaining copies of Data Protection and Data Processing Agreements
  • Ensuring non-EEA organisations have Privacy Shield Certification

  We store and manage personal data in accordance with data protection regulations. If you sign up for our charity newsletter, your contact details will be securely stored and processed using Charity Digital, our email marketing platform. Additionally, we use Microsoft Dynamics as our Customer Relationship Management (CRM) system to manage our interactions and engagement with supporters. Both platforms are used solely to support our charitable activities and communications, and your data will never be sold or shared for commercial purposes.

  We use a third party company, Softforge, to manage and host our www.pkdcharity.org.uk website. The company has security in place to spot hacking attempts and any performance issues with the site. The web server is in the UK and they hold back-ups in Ireland.

• How secure is your Data?

  The security of your personal data is essential to us. The Charity has taken appropriate technical and organisational measures to mitigate such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.

  Because the internet is not completely secure, any email you send to us is sent at your own risk. All incoming emails are automatically monitored for spam and blocked if considered unsafe. It is your responsibility to ensure that any email you send us is lawful and does not contain a virus.

• Do we share your Personal Data?

  We will not share any of your personal data with any third parties for any purposes, subject to one important exception.

  In some limited circumstances, we may be legally required to share certain personal data, which might include yours, if we are involved in legal proceedings or complying with legal obligations, a court order, or the instructions of a government authority.

  We do sometimes contract with the following third parties to supply services to you on our behalf. These may include payment processing, delivery, and marketing. In some cases, those third parties may require access to some or all of your personal data that we hold.

  • PayPal
  • Charity Checkout
  • JustGiving
  • VirginMoney Giving
  • BTMyDonate
  • CAF Donate
  • Accountants

  If any of your personal data is required by a third party, as described above, we will take steps to ensure that your personal data is handled safely, securely, and in accordance with your rights, our obligations, and the third party’s obligations under the law.

  Some of those third parties are located outside of the European Economic Area. If any personal data is transferred to a third party outside of the EEA, we will take suitable steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR, as explained above.

• How can you access your Personal Data?

  If you want to know what personal data we have about you, you can ask for details of that personal data and for a copy of it. This is known as a “subject access request”.

  All subject access requests should be made in writing and sent to the email or postal addresses shown below. To make this as easy as possible for you, a Subject Access Request Form is available for you to use. You do not have to use this form, but it is the easiest way to tell us everything we need to know to respond to your request as quickly as possible.

  There is not normally any charge for a subject access request. If your request is ‘manifestly unfounded or excessive’ (for example, if you make repetitive requests) a fee may be charged to cover our administrative costs in responding.

  We will respond to your subject access request within not more than one month of receiving it. Normally, we aim to provide a complete response, including a copy of your personal data within that time. In some cases, however, particularly if your request is more complex, more time may be required up to a maximum of three months from the date we receive your request. We will keep you fully informed of our progress.

• Changes to this Privacy Notice?

  We may change this Privacy Notice from time to time. This may be necessary, for example, if the law changes.

  This Privacy Notice was adopted on 23 May 2018

• How to Contact Us

  Registered office: 86-90 Paul Street, London, EC2A 4NE
  Office phone: 020 7387 0543
  Office email: [email protected]

  Data Protection Trustee: Mr Nicholas Tracey, [email protected]

We want you to enjoy your visit to the Polycystic Kidney Disease Charity (“PKDC”) website and we try to ensure that information on our site is accurate, complete and up-to-date.

All information contained on this site is intended for general educational, informational and helpful purposes only. It is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment.

We do not knowingly reproduce inaccurate or libellous material. Individuals and organisations referred to by us do not necessarily endorse this reference. Always seek the advice of your consultant, GP, or other qualified health professional before starting any new treatment. Medical information changes rapidly. We make efforts to update the content on the site but some information may be out of date.

Without prejudice to your statutory rights the site and all information, text, names, images, pictures, logos, links and icons and other materials (without limitation) are provided ‘AS IS’ and on an 'IS AVAILABLE' basis without representation warranty or endorsement, express or implied. In particular, the information provided on this site does not constitute business, medical or other professional advice, and is subject to change. Nor do we guarantee that use of this site will be uninterrupted or error-free, or that the site and its servers are free of computer viruses or bugs.

In no event will the PKDC be liable to any person for any injury, damage or loss that may arise from the use of any information contained in our site or products advertised on our site, including, without limitation, indirect or consequential damages, or any damages whatsoever arising from use or loss of use, data, or profits, whether in action of contract, negligence or other tort, arising out of or in connection with the use of the site.

HON Code of Conduct (HONcode) for medical and health websites

We try wherever possible to comply with HONcode Principles in particular with regard to:

• Presentation of medical information
• Purpose of the website
• Privacy and confidentiality
• Referenced and dated information
• Disclosure of the governance of the PKDC and sources of funding

Copyright

All rights, including copyright and database right, in the PKDC website and its contents, are owned by or licensed to PKDC, or otherwise used by PKDC as permitted by applicable law or the copyright holder. You may not copy, reproduce, republish, download, post, broadcast or transmit any text, images, graphic, logo, button, icon, image and their selection and arrangement thereof, and any underlying source code and software, for any commercial or public purpose without prior written permission from PKDC or the copyright holder or in accordance with current Copyright, Designs and Patents Acts. You may not adapt, alter or create any of the material or information in this site or use it for any other purpose other than for your personal non-commercial use. You agree to use this site only for lawful purposes.

The PKDC reserves the right to use for its own purposes any material submitted to the site, including text and images, either on the site or in any other form, including for publicity purposes. The PKDC reserves the right to monitor submissions to the site and to edit or reject any submissions.

Trademarks

All names, images, logos identifying the PKDC are proprietary marks. All third party brand, product, service and company names contained on this site are the trademarks, service marks and trade names of their respective holders. The PKDC does not give permission for their use by any person other than the holders. Any such use may constitute an infringement of the holders’ rights.

External links

The PKDC has endeavoured to assess the quality of external sites but does not represent, warrant, endorse or hold responsibility over any external sites that may be linked to and from this site. Any external site that you visit by clicking through a link on this site is outside the control of the PKDC and you visit entirely at your own risk.

Jurisdiction

These Terms of Use shall be governed by and construed in accordance with the laws of England and Wales. Disputes arising here from shall be exclusively subject to the jurisdiction of the courts of England and Wales.

If any of these Terms should be determined to be illegal, invalid or otherwise unenforceable by reason of the laws of any state or country in which these Terms are intended to be effective, it shall be severed and deleted from this clause. All other Terms of Use and Terms and Conditions shall remain in full force and continue to be binding and enforceable.

The PKDC reserves the right to change these any of its terms and conditions at any time by posting changes online.

How to contact us

We welcome your feedback. Please leave your comments on the page provided or send a message using the Contact Us form on the site.

Or write to: The Polycystic Kidney Disease Charity, 86-90 Paul Street, London, EC2A 4NE
Phone: +44 (0) 20 7387 0543

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Introduction

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.

How we use social media and online communities

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.

Posting guidelines

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:

• Incite hatred on the basis of race, religion, gender, nationality or sexuality or any other personal characteristic
• Are off-topic or unrelated
• Are disrespectful, malicious or offensive
• Could constitute a personal attack on a person’s character
• Impersonate or falsely claim to represent a person or organisation
• Are party political
• Include swearing or obscenity
• Are illegal – including libel or breaking copyright
• Could be considered spam
• Contain personal information like telephone numbers, address details, etc
• Advertise commercial activity or make requests for donations or money, unless agreed in advance with PKD Charity UK

If you have any questions or concerns about posting, please contact us by emailing 

Moderation policy

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.

Links

Yahoo Groups

https://uk.groups.yahoo.com/neo/groups/PKD_uk/info
This group was established over 10 years ago and has nearly 700 members, who are very caring and well-informed.

HealthUnlocked communities

Started in London in 2010, HealthUnlocked is now a large social network, linked to NHS England.
We have two communities:
For ADPKD
https://healthunlocked.com/pkdcharity-autosomaldominant

For ARPKD
https://healthunlocked.com/pkdcharity-autosomalrecessive

Facebook

We have one Facebook page:
Polycystic Kidney Disease (PKD) Charity UK
https://www.facebook.com/pkdcharity
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:

• PKD Charity UK
  https://www.facebook.com/groups/pkdcharityUK/
  For anyone in the UK affected by polycystic kidney disease (PKD).
• PKD in young people
  https://www.facebook.com/groups/pkdinyoungpeople/
  A group for young people with PKD
• Parents of children with PKD
  https://www.facebook.com/groups/Parentsofchikdrenwithpkd/
  For parents who have children with PKD - mainly for those whose children have or may have ADPKD although ARPKD parents are also welcome.
• PKD North West
  https://www.facebook.com/groups/NorthwestPKD/
  For people based in the NW of the UK, who are interested in forming a regional support group

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.

Twitter

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:

• is to publicise an event or activity the follower is undertaking for charity purposes
• is to publicise a message that may be of interest to its followers.

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.

Website linking

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:

1. Sites that are judgmental towards any individuals or groups of individuals.
2. Sites that contain illegal, offensive or misleading information.
3. Sites promoting unproven advice, therapies or products.
4. Sites that charge for access.
5. Sites that have unethical values.
6. Sites that offer cures or treatments for polycystic kidney disease.

Copyright

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.

Please send suggestions for improvement to 

© PKD Charity 2014 | www.pkdcharity.org.uk
Registered charity No 1160970/ SC047730

We want you to enjoy your visit to the Polycystic Kidney Disease Charity (“PKDC”) website and we try to ensure that information on our site is accurate, complete and up-to-date.

All information contained on this site is intended for general educational, informational and helpful purposes only. It is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment.

We do not knowingly reproduce inaccurate or libellous material. Individuals and organisations referred to by us do not necessarily endorse this reference. Always seek the advice of your consultant, GP, or other qualified health professional before starting any new treatment. Medical information changes rapidly. We make efforts to update the content on the site but some information may be out of date.

Without prejudice to your statutory rights the site and all information, text, names, images, pictures, logos, links and icons and other materials (without limitation) are provided ‘AS IS’ and on an 'IS AVAILABLE' basis without representation warranty or endorsement, express or implied. In particular, the information provided on this site does not constitute business, medical or other professional advice, and is subject to change. Nor do we guarantee that use of this site will be uninterrupted or error-free, or that the site and its servers are free of computer viruses or bugs.

In no event will the PKDC be liable to any person for any injury, damage or loss that may arise from the use of any information contained in our site or products advertised on our site, including, without limitation, indirect or consequential damages, or any damages whatsoever arising from use or loss of use, data, or profits, whether in action of contract, negligence or other tort, arising out of or in connection with the use of the site.

HON Code of Conduct (HONcode) for medical and health websites

We try wherever possible to comply with HONcode Principles in particular with regard to:

• Presentation of medical information
• Purpose of the website
• Privacy and confidentiality
• Referenced and dated information
• Disclosure of the governance of the PKDC and sources of funding

Copyright

All rights, including copyright and database right, in the PKDC website and its contents, are owned by or licensed to PKDC, or otherwise used by PKDC as permitted by applicable law or the copyright holder. You may not copy, reproduce, republish, download, post, broadcast or transmit any text, images, graphic, logo, button, icon, image and their selection and arrangement thereof, and any underlying source code and software, for any commercial or public purpose without prior written permission from PKDC or the copyright holder or in accordance with current Copyright, Designs and Patents Acts. You may not adapt, alter or create any of the material or information in this site or use it for any other purpose other than for your personal non-commercial use. You agree to use this site only for lawful purposes.

The PKDC reserves the right to use for its own purposes any material submitted to the site, including text and images, either on the site or in any other form, including for publicity purposes. The PKDC reserves the right to monitor submissions to the site and to edit or reject any submissions.

Trademarks

All names, images, logos identifying the PKDC are proprietary marks. All third party brand, product, service and company names contained on this site are the trademarks, service marks and trade names of their respective holders. The PKDC does not give permission for their use by any person other than the holders. Any such use may constitute an infringement of the holders’ rights.

External links

The PKDC has endeavoured to assess the quality of external sites but does not represent, warrant, endorse or hold responsibility over any external sites that may be linked to and from this site. Any external site that you visit by clicking through a link on this site is outside the control of the PKDC and you visit entirely at your own risk.

Jurisdiction

These Terms of Use shall be governed by and construed in accordance with the laws of England and Wales. Disputes arising here from shall be exclusively subject to the jurisdiction of the courts of England and Wales.

If any of these Terms should be determined to be illegal, invalid or otherwise unenforceable by reason of the laws of any state or country in which these Terms are intended to be effective, it shall be severed and deleted from this clause. All other Terms of Use and Terms and Conditions shall remain in full force and continue to be binding and enforceable.

The PKDC reserves the right to change these any of its terms and conditions at any time by posting changes online.

How to contact us

We welcome your feedback. Please leave your comments on the page provided or send a message using the Contact Us form on the site.

Or write to: The Polycystic Kidney Disease Charity, 86-90 Paul Street, London, EC2A 4NE
Phone: +44 (0) 20 7387 0543

Privacy notice

• About Us

  The Polycystic Kidney Disease Charity (“the Charity”) is a registered charity in England and Wales (1160970) and Scotland (SC047730); and a company limited by guarantee registered in England and Wales under number 9486245. Our full contact details are below.

• What does this Privacy Notice cover?

  This Notice explains how we use your personal data: how it is collected, how it is held, and how it is processed. It also explains your rights under the law relating to your personal data.

• What is Personal Data?

  Personal data is defined by the UK General Data Protection Regulation (UK GDPR), tailored by the Data Protection Act 2018 (the “GDPR”) as any information relating to an identified or identifiable natural person. In simple terms, this means any information that enables you to be identified.

  Personal data covers obvious information such as your name and contact details, but it also covers less obvious information such as identification numbers, electronic location data, and information specific to your physical, physiological, genetic, mental, economic, cultural, or social identity.

• What are your Rights?

  Under the GDPR, you have the following rights, which we will always work to uphold:

  • The right to be informed about our collection and use of your personal data. This Privacy Notice should tell you everything you need to know, but you can always contact us to find out more or to ask any questions.
  • The right to access the personal data we hold about you.
  • The right to have your personal data rectified if any of your personal data held by us is inaccurate or incomplete.
  • The right to be forgotten, i.e. the right to ask us to delete or otherwise dispose of any of your personal data that we have.
  • The right to restrict (i.e. prevent) the processing of your personal data.
  • The right to object to us using your personal data for a particular purpose or purposes.
  • The right to data portability. This means that you can ask us for a copy of your personal data held by us to re-use with another service or business in many cases.
  • Rights relating to automated decision-making and profiling. Note that however we do not use your personal data in this way.

  For more information about our use of your personal data or exercising your rights as outlined above, please contact us using the details below.

  You can obtain further information about your rights from the Information Commissioner’s Office or your local Citizens Advice Bureau.

  If you have any cause for complaint about our use of your personal data, you have the right to lodge a complaint with the Information Commissioner’s Office. The Charity is registered with the Information Commissioner, Number Z9468678. The Charity is also registered with the Fundraising Regulator.

• What Personal Data do we collect?

  We may collect some or all of the following personal data (this will vary according to your relationship with us):

  • Name
  • Date of birth
  • Gender
  • Address
  • Email address
  • Telephone number
  • Business name
  • Job title
  • Profession
  • Payment information
  • Employment details
  • Information about your preferences and interests, such as fundraising or dietary needs for an event
  • Online identifier (IP address)

  The Charity does not collect special category or sensitive data as a matter of course. However, individuals may on occasion supply health-related information in relation to delivery of services by the Charity. For example, an individual needing befriending may share such information to enable the Charity to ‘match’ them to a volunteer; or an individual may share medical information that will help the Charity to liaise directly with a healthcare professional or similar on their behalf. The information is retained only as long as is necessary and is processed solely for this purpose.

• How do we collect your Data?

  There are several ways we may collect information about you. These include:

  • When you provide it to us by getting in contact (phone/email/web form/via social media)
  • When you subscribe to receive our newsletter (electronic or postal) or place an order with us for products or services
  • When you register for and/or attend a Charity event

  We do not record phone calls that you make to us. However, if you leave a voicemail, the message is stored in an audio file. After we have answered your query, we will process any personal data in accordance with our privacy and retention policies, outlined below.

  If you send us an email, we will process any personal data in accordance with our policies, and to respond to your message.

  We sometimes use a form on our website to collect information. We delete the information after we have responded to any message and/or processed your personal data in accordance with our policies.

  If you send us a message via social media, your message will be stored by the social media platform in accordance with its own privacy policy.  If the message contains your personal data, we will process this in accordance with our own policies.

  We use a third party company, CharityDigital, to collect your personal data for the purpose of sending you information and marketing communications by email. See below for more information about how your data is stored securely.

  We use a third party company, Eventbrite, to collect your personal data when you register for an event with us. See below for more information about how your data is stored securely.

  We may also collect information about you if you consent to the use of cookies when using our website. For example, we use Google Analytics to collect information from our website to help us analyse how many visitors use the site and what pages they read. This information does not directly identify you, the visitor, and we don’t allow Google to try to find out your identity.

• How do we use your Personal Data?

  Under the GDPR, we must always have a lawful basis for using personal data. This may be because the data is necessary for our performance of a contract with you, because you have consented to our use of your personal data, or because it is in our legitimate interests to use it. We will use your personal data for one of the following purposes:

  • Internal record keeping.
  • Maintaining a record of Gift Aid Declarations for HMRC.
  • Providing our services to you.
  • Providing goods that you have purchased.
  • Personalising and improving services for you.
  • Communicating with you. This may include responding to emails or calls from you.
  • Supplying you with information by email AND/OR post that you have opted-in to (you may unsubscribe or opt-out at any time by contacting us using the details below or clicking Unsubscribe in relevant emails).
  • Carrying out research and getting feedback.
  • Statistics reporting.
  • Evaluating website performance.

  With your permission and/or where permitted by law, we may also use your personal data for marketing purposes, which may include contacting you by email AND/OR telephone AND/OR text message AND/OR post with information, news, and fundraising appeals.

  We will not send you unlawful marketing or spam. We will always work to fully protect your rights and comply with our obligations under the GDPR and the Privacy and Electronic Communications (EC Directive) Regulations 2003, and you will always have the opportunity to opt-out.

• How long will we keep your Personal Data?

  We will not keep your personal data for any longer than is necessary in light of the reason(s) for which we first collected it. The table below shows how long we will keep your personal data. The retention period is determined by the type of data.

  The Charity may hold information on individuals under 16 but only with the express permission of parents/guardians. We will review the retention period schedule every 3 years.

  Description	Type of Data	Purpose of Data	Retention Period
  Gift Aid Declarations and Associated HMRC Schedules	Name, address, postcode	Claim Gift Aid on donations	No longer than the end of the tax year following 7 years from the last donation.
  Supporters	Name, address, contact details, interests; online identifier	Provide updates on activities and promote fundraising	Indefinitely, in accordance with GDPR.
  Donors (fundraisers)	Name, address, contact details, fundraising amount; online identifier	Record donations for accounting purposes; maintain ongoing contact	No longer than the end of the tax year following 7 years from the last donation. In the case of legacies, no longer than the end of the tax year 7 years after the legacy is received.
  Beneficiaries, including delegates at education days	Name, address, contact details, sensitive data (medical, genetic); online identifier	EnableProvide support and updates on activities	Indefinitely, in accordance with GDPR.
  Trustees	Name, address, contact details; DOB; nationality; bank details	Legal	As required by the Charity Commission and Companies Act
  Volunteers	Name, address, contact details; bank details	Management and governance; safeguarding	Indefinitely, in accordance with GDPR
  Healthcare Professionals	Name, address, contact details, speciality	Provide updates and engage	Indefinitely in accordance with GDPR
  Survey respondents	Online identifier; and sometimes personal data	Gather feedback	3 years
  Photo/video permissions	Name, address, contact details	Case studies, PR. NB: some permissions may refer to children under 16 years but these are only held with the express permission of parents/guardians.	Indefinitely, in accordance with GDPR
  Contractors & Employees	Name, address, contact details, bank details	Contractual	As determined by accounting and HR legislation
  Competitions, raffles etc	Name, address, contact details	Informing, clarifying	5 years
  General enquiries	Name, address, contact details, online identifier	Provide information and signpost to other resources	2 years

• How and where do we store or transfer your Personal Data?

  We will aim to store your personal data in the UK OR within the European Economic Area (the “EEA”). The EEA consists of all EU member states, plus Norway, Iceland, and Liechtenstein. This means that your personal data will be fully protected under the GDPR or to equivalent standards by law.

  However, due to the global structure of the internet and use of cloud servers, we may store or transfer some or all of your personal data in countries that are not part of the European Economic Area (the “EEA” consists of all EU member states, plus Norway, Iceland, and Liechtenstein). These are known as “third countries” and may not have data protection laws that are as strong as those in the UK and/or the EEA. This means that we will take additional steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR including:

  • Obtaining copies of Data Protection and Data Processing Agreements
  • Ensuring non-EEA organisations have Privacy Shield Certification

  We use a third party company, Softforge, to manage and host our www.pkdcharity.org.uk website. The company has security in place to spot hacking attempts and any performance issues with the site. The web server is in the UK and they hold back-ups in Ireland.

• How secure is your Data?

  The security of your personal data is essential to us. The Charity has taken appropriate technical and organisational measures to mitigate such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.

  Because the internet is not completely secure, any email you send to us is sent at your own risk. All incoming emails are automatically monitored for spam and blocked if considered unsafe. It is your responsibility to ensure that any email you send us is lawful and does not contain a virus.

• Do we share your Personal Data?

  We will not share any of your personal data with any third parties for any purposes, subject to one important exception.

  In some limited circumstances, we may be legally required to share certain personal data, which might include yours, if we are involved in legal proceedings or complying with legal obligations, a court order, or the instructions of a government authority.

  We do sometimes contract with the following third parties to supply services to you on our behalf. These may include payment processing, delivery, and marketing. In some cases, those third parties may require access to some or all of your personal data that we hold.

  • PayPal
  • Charity Checkout
  • JustGiving
  • VirginMoney Giving
  • BTMyDonate
  • CAF Donate
  • Accountants

  If any of your personal data is required by a third party, as described above, we will take steps to ensure that your personal data is handled safely, securely, and in accordance with your rights, our obligations, and the third party’s obligations under the law.

  Some of those third parties are located outside of the European Economic Area. If any personal data is transferred to a third party outside of the EEA, we will take suitable steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR, as explained above.

• How can you access your Personal Data?

  If you want to know what personal data we have about you, you can ask for details of that personal data and for a copy of it. This is known as a “subject access request”.

  All subject access requests should be made in writing and sent to the email or postal addresses shown below. To make this as easy as possible for you, a Subject Access Request Form is available for you to use. You do not have to use this form, but it is the easiest way to tell us everything we need to know to respond to your request as quickly as possible.

  There is not normally any charge for a subject access request. If your request is ‘manifestly unfounded or excessive’ (for example, if you make repetitive requests) a fee may be charged to cover our administrative costs in responding.

  We will respond to your subject access request within not more than one month of receiving it. Normally, we aim to provide a complete response, including a copy of your personal data within that time. In some cases, however, particularly if your request is more complex, more time may be required up to a maximum of three months from the date we receive your request. We will keep you fully informed of our progress.

• Changes to this Privacy Notice

  We may change this Privacy Notice from time to time. This may be necessary, for example, if the law changes.

  This Privacy Notice was adopted on 23 May 2018

• How to Contact Us

  Registered office: 86-90 Paul Street, London, EC2A 4NE
  Office phone: 020 7387 0543
  Office email: [email protected]

  Data Protection Trustee: Mr Nicholas Tracey, 

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