Terms and Conditions

These website terms and conditions, together with the below privacy statement, set out the terms of use by which you may make use of our website www.rarerenal.org, whether as a guest or a registered user. Please read these Website Terms carefully before you use the Site. Your access to and use of our Site is subject to these Website Terms. By using the Site you are deemed to have read and accepted and agree to be bound by the Website Terms. If you do not agree to the Website Terms, please refrain from using our Site.

  • About Us

    www.RareRenal.org is a Site operated by the UK Renal Registry to provide up-to-date information about rare kidney diseases. The UK Renal Registry is part of the Renal Association. The Renal Association is a registered charity (registered charity no 800733), and a company limited by guarantee registered in England and Wales under company number 2229663. Our registered office is at Durford Mill, Petersfield, Hampshire, GU31 5AZ. Responsibility for the website is held by the RareRenal.org Editorial Board whose governance is provided by the Renal Information Governance Board of the UK Renal Registry.

  • Authorship

    Information on RareRenal.org is written specifically for either patients/carers or clinicians of those with rare kidney diseases. The information contained on the site is the opinion of the expert Rare Disease Groups (RDGs) that are authorised by the UK Renal Registry on behalf of the Renal Association according to the Integrated Strategy for Rare Kidney Diseases 2010. Information that is evidence-based is referenced in the text.

  • Accessing Our Site

    Access to our Site is permitted on a temporary basis, and we reserve the right to withdraw or amend the service we provide on our Site without notice. We will not be liable if for any reason our Site is unavailable at any time or for any period. From time to time, we may restrict access to some parts of our Site, or our entire Site, to users who have registered with us. If you choose, or you are provided with, a user identification code, password or any other piece of information as part of our security procedures, you must treat such information as confidential, and you must not disclose it to any third party. We have the right to disable any user identification code or password, whether chosen by you or allocated by us, at any time, if in our opinion you have failed to comply with any of the provisions of these terms of use. You are responsible for making all arrangements necessary for you to have access to our Site. You are also responsible for ensuring that all persons who access our Site through your internet connection are aware of these terms, and that they comply with them.

  • Intellectual Property Rights

    We are the owner or the licensee of all intellectual property rights contained within our Site, and in the material published on it. This excludes external Sites which we reference. These works are protected by intellectual property rights, including, but not limited to, copyright, trade mark rights and database rights. All such rights are reserved. You may store on your personal computer or print copies of extracts from these pages for your personal and non-commercial use only but our status (and that of any identified contributors) as the authors of material on our Site must always be acknowledged. You may draw the attention of others within your organisation to material posted on our Site. You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not use any illustrations, photographs, video or audio sequences or any graphics separately from any accompanying text. You must not use any part of the materials on our Site for commercial purposes without obtaining a licence to do so from us or our licensors. Any unauthorised use of the materials contained on the Site may constitute intellectual property infringement. You may not “mirror” or cache information provided on this website without prior written permission from the UK Renal Registry. If you print off, copy or download any part of our Site in breach of these Website Terms, your right to use our Site will cease immediately and you must, at our option, return or destroy any copies of the materials you have made.

  • Reliance on Information Posted

    The content of the Site is provided for information purposes only. Professional advice should be sought before taking, or refraining from taking, any action on the basis of the information supplied or linked to on this Site. We cannot provide advice to individual patients through this site, however UK clinicians can approach Rare Disease Groups (RDGs) for expert advice on patients in their care. Every effort has been made to ensure that information supplied on this Site is accurate, but the UK Renal Registry cannot be held responsible for any errors or omissions therein, nor for the consequences of these or for any loss or damage suffered by users of any of the information published on any of these pages. We therefore disclaim all liability and responsibility arising from any reliance placed on such materials by any visitor to our Site, or by anyone who may be informed of any of its contents. Furthermore, whilst the UK Renal Registry endeavours to keep the Site up to date, information published may be out of date and readers should check this before relying on this information.

  • Our Liability

    The material displayed on our Site is provided without any guarantees, conditions or warranties as to its accuracy. To the extent permitted by law, we, and third parties connected to us hereby expressly exclude:

    • all conditions, warranties and other terms which might otherwise be implied by statute, common law or the law of equity; and
    • any liability for any direct, indirect or consequential loss or damage incurred by any user in connection with our Site or in connection with the use, inability to use, or results of the use of our Site, any websites linked to it and any materials posted on it, including, without limitation any liability for:
    • loss of income or revenue;
    • loss of business;
    • loss of profits or contracts;
    • loss of anticipated savings;
    • loss of data;
    • loss of goodwill;
    • loss of reputation;
    • wasted management or office time; and
    • for any other loss or damage of any kind, however arising and whether caused by tort (including negligence), breach of contract or otherwise, even if foreseeable.

      This does not affect our liability for death or personal injury arising from our negligence, nor our liability for fraudulent misrepresentation or misrepresentation as to a fundamental matter, nor any other liability which cannot be excluded or limited under applicable law.

  • Our Site Changes Regularly

    We aim to update our Site regularly, and may change the content at any time. If the need arises, we may suspend access to our Site, or close it indefinitely. Any of the material on our Site may be out of date at any given time, and we are under no obligation to update such material.

  • Viruses, Hacking and Other Offences

    You must not misuse our Site by knowingly introducing viruses, trojans, worms, logic bombs or other material which is malicious or technologically harmful. You must not attempt to gain unauthorised access to our Site, the server on which our Site is stored or any server, computer or database connected to our Site. You must not attack our Site via a denial-of-service attack or a distributed denial-of service attack. By breaching this provision, you would commit a criminal offence under the Computer Misuse Act 1990. We will report any such breach to the relevant law enforcement authorities and we will co-operate with those authorities by disclosing your identity to them. In the event of such a breach, your right to use our Site will cease immediately. We will not be liable for any loss or damage caused by a distributed denial-of-service attack, viruses or other technologically harmful material that may infect your computer equipment, computer programs, data or other proprietary material due to your use of our Site or to your downloading of any material posted on it, or on any website linked to it.

  • Linking to Our Site

    Other organisations are permitted to link to the our home page without seeking specific permission provided it is done in a way that is fair and legal and does not damage our reputation or take advantage of it, and is not defamatory. You must not establish a link in such a way as to suggest any form of association, approval or endorsement on our part where none exists. You must not establish a link from any website that is not owned by you. Our Site must not be framed on any other Site, nor may you create a link to any part of our Site other than the home page. We reserve the right to withdraw linking permission without notice.

  • Links from Our Site

    Where our Site contains links to other sites and resources provided by third parties, these links are provided for your information only. We have no control over the contents of those sites or resources, and accept no responsibility for them or for any loss or damage that may arise from your use of them.

  • Jurisdiction and Applicable Law

    The English courts will have exclusive jurisdiction over any claim arising from, or related to, a visit to our site. These Website Terms and any dispute or claim arising out of or in connection with them or their subject matter or formation (including non-contractual disputes or claims) shall be governed by and construed in accordance with the law of England and Wales.

  • Your Concerns

    If you have any concerns about material which appears on our site, please contact info@rarerenal.org Thank you for visiting our site.

  • Data Protection Privacy Notice


    This page explains why information is collected about you and how your information may be used. This is called a Fair Processing Notice or Privacy Notice. It applies to visitors to the rarerenal.org website who have signed up to the RareRenal newsletter and describes how the Rare Diseases Group collects, uses and processes your personal information and how, in doing so, it complies with its legal obligations to the public. Your privacy is important and we are committed to safeguarding your data privacy rights.

    This notice will address the following areas:

    • Key definitions
    • What is RareRenal?
    • Why RareRenal collects your information
    • What personal information does RareRenal collect?
    • Where does RareRenal collect your information from?
    • How does RareRenal use your information?
    • Who your information is shared with
    • RareRenal’s lawful basis for collecting your information
    • How RareRenal maintains the confidentiality of your information
    • RareRenal and partner organisations
    • How long your information will be stored
    • Your individual rights
    • Objections and complaints
    • How to contact RareRenal
    • Changes to this notice

    Key definitions

    Data controller – the organisation, person or persons who determine the purposes and means of processing personal data. For the purpose of this notice and how it affects your data the data controller is the Renal Association (the operator of RareRenal).

    Data processor – in relation to your personal data, means any person (other than an employee of the data controller) who processes the data on behalf of the data controller. 

    Data protection officer – an existing employee or externally appointed person in place to assist in monitoring internal compliance, informing and advising on data protection obligations, providing advice regarding Data Protection Impact Assessments (DPIAs) and acting as a contact point for data subjects and the supervisory authority. The contact details for RareRenal’s data protection officer can be found at the end of this notice.

    What is RareRenal?

    RareRenal is a programme to provide up-to-date information on rare kidney diseases for patients, their carers, and their clinicians. It does this through its website, rarerenal.org and a regular newsletter.

    RareRenal is operated and governed by the Renal Association, a not for profit organisation registered with the Charity Commission as a membership organisation for healthcare professionals caring for people with kidney disease. Full details of their work can be found here: https://renal.org/.

    Why RareRenal collects your information

    RareRenal collects your information to provide you with information regarding rare kidney diseases and its related work.

    What personal information does RareRenal collect?


    When subscribing to the RareRenal newsletter, you will be asked to submit your full name (forename and surname) and your email address.

    ‘Contact’ page

    When submitting a contact request to RareRenal, you will be asked to submit your full name (forename and surname) and your email address.

    Use of cookies by RareRenal

    Cookies are small text files that are placed on your computer by websites that you visit. They are widely used in order to make websites work, or work more efficiently, as well as to provide information to the owners of the site. Most web browsers allow you some control of most cookies through the browser settings or through free software such as Super-Antispyware or Cleaner. To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, visit the All About Cookies website at http://www.allaboutcookies.org


    RareRenal’s webserver records your visits to help RareRenal understand how you use the site, so it can improve the site and provide better services.

    Use of links

    Throughout RareRenal’s web pages, the organisation provides links to other sites which may contain information of interest to site visitors. RareRenal takes no responsibility for, and exercises no control over the organisations, views, or accuracy of the information contained on other servers. Creating a text link from another website to RareRenal’s website does not require permission.

    Where does RareRenal collect your information from?

    Your data is collected through the RareRenal website.

    How does RareRenal use your information?


    If you agree (consent) to receive communications from RareRenal, your full name and email address will be kept as part of a mailing list for the RareRenal newsletter and for additional updates about RareRenal’s work. This is held in a spreadsheet which is stored on a secure server.

    Your information is not used for any other purpose.

    ‘Contact’ page

    When you contact RareRenal via the ‘Contact’ page on renal.org we will use your contact details to respond to your query or comment. Depending on the nature of the query we may pass on your details to an appropriate individual outside of the Renal Association, but this will only be done with your prior consent to do so.

    Who your information is shared with

    Your information is not made available to anyone outside of the RareRenal programme team unless you have given prior consent.

    The lawful basis for collecting your information

    When you enter your personal details into the RareRenal website to sign up to our newsletter, you are asked to consent to receive communications from us. This is the lawful basis under the General Data Protection Regulation for processing your data.

    How RareRenal maintains the confidentiality of your information

    RareRenal is committed to protecting your privacy and will only use information collected lawfully in accordance with the:

    • Data Protection Act (2018)
    • General Data Protection Regulation (2018)
    • Human Rights Act (1998)
    • Common Law Duty of Confidentiality

    Think Kidneys will keep your information secure in accordance with its legal responsibilities; including taking reasonable steps to safeguard against your information being accessed unlawfully or maliciously by a third party, accidently lost, destroyed or damaged.

    RareRenal will not disclose your information to third parties without your consent unless there are exceptional circumstances such as situations when the health and safety of others is at risk, or where the law permits information to be passed on.

    All Renal Association employees working as part of RareRenal are asked to sign a confidentiality agreement as part of their employment contract. If a sub-contractor acts as a data processor for the UKRR an appropriate contract will be established for the processing of your information.

    RareRenal and partner organisations

    RareRenal has no partner organisations.

    How long your information will be stored

    Your data will be stored in the RareRenal database indefinitely for the purposes of sending you information unless you choose to withdraw your consent or ask for your data to be erased. You are able to exercise your rights (as listed below) under Data Protection legislation at any time by contacting RareRenal via the details at the end of this notice.

    Your individual rights

    This section describes how you can access, amend, erase, and move your personal information, withdraw your consent and object to or complain about the data that we hold about you.

    Right to access your data (data subject access requests)

    You have the right to receive a copy of your personal information that RareRenal holds by making a written request to the address at the end of this document. RareRenal will normally provide your information within one month of receiving all the information needed from you to respond to your request.

    Right to rectification (right to amend your information)

    You have the right to have your information amended. Please contact us in writing if you want information corrected.

    Right to withdraw consent and have your information erased

    You can withdraw consent for RareRenal to hold your data at any time. You can either contact RareRenal directly in writing using the address at the end of this document or reply to the emails that we have sent to you with ‘unsubscribe’ as the subject.

    Right of data portability (right to move your data)

    You have the right to request a secure transfer of your data that RareRenal hold about you to another data controller. We will transfer your data to you directly for you to transfer on to the new data controller. You should make the request in writing to RareRenal (see the section ‘How to contact RareRenal’ for our contact details). No fee will be payable and the information will be transferred within one calendar month.

    Right to object

    RareRenal use your information for the purpose you consented to. If you do not agree with this you have the right to object. See the section below on ‘Objections and complaints’ that explains who to contact if you have an objection. RareRenal will respond to your objection within a month (although may be allowed to extend this period in certain cases).

    Objections and complaints

    Should you have any concerns about how your information is managed, please contact the data protection officer for the Renal Association in writing (see section below ‘How to contact RareRenal). If you are still unhappy following a review by the data protection officer, you have a right to lodge a complaint with the Information Commissioner:

    Information Commissioner

    Wycliffe house

    Water Lane



    SK9 5AF

    Tel: 01625 545745


    How to contact RareRenal

    If you have any questions regarding this privacy notice, how your data are used, or wish to exercise your rights, you can contact RareRenal on the details below.

    The data protection officer is: Mr Tom Gray

    He can be contacted by:


    Tom Gray


    c/o The Renal Association

    Learning and Research Building

    Southmead Hospital


    BS10 5NB

    Tel: 0117 4148 157

    Email: tom.gray@renalregistry.nhs.uk      

    Alternatively, you can contact:

    The senior information risk owner – Dr Retha Steenkamp

    Email: retha.steenkamp@renalregistry.nhs.uk   


    The Caldicott Guardian – Dr James Medcalf

    Email: james.medcalf@nhs.net

    Changes to this notice

    We may amend this privacy notice from time to time. If you are dissatisfied with any aspect of our privacy notice, please contact the data protection officer.

    Downloadable Privacy Notice


RareRenal Terms & Conditions Version 1 Updated February 2019
Written by the Rarerenal.org Operational Management Board