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.

  • Privacy and Cookies

    This page explains our privacy policy and how we will use and protect any information about you that you give us when you visit this website.

    This privacy statement only covers the RareRenal website. It does not cover any sites that can be linked to from this site, so you should always be aware when you are moving to another site and read the privacy statement on that site.

  • What information do we collect?

    You may be asked to submit personal information about yourself (e.g. name and email address) in order to receive or use services on our website. Such services include bulletins, email updates, website feedback.

    By entering your details in the fields requested, you enable RareRenal and its service providers to provide you with the services you select. Any information you provide to RareRenal will only be used by us, our agents and service providers and will not be disclosed unless we are obliged or permitted to by law to do so.

    If you post or send offensive, inappropriate or objectionable content anywhere on www.RareRenal.org or otherwise engage in any disruptive behaviour on www.RareRenal.org we may use whatever information is available to us, about you, to stop such behaviour. We will hold your personal information on our systems for as long as you use the service you have requested, and remove it in the event that the purpose has been met or when you no longer wish to continue your subscription.

  • The Data Protection Act

    Under the Data Protection Act, we have a legal duty to protect any information we collect from you. We use leading technologies and encryption software to safeguard your data and keep strict security standards to prevent any unauthorised access to it.

    We do not pass on your details to any third party or other government department.

  • Changes to our policy

    If our privacy policy changes in any way, we will place an updated version on this page. Regularly reviewing the page ensures you are always aware of what information we collect, how we use it and under what circumstances, if any, we will share it with other parties.

  • Security

    This site has security measures in place to protect the loss and alteration of information under our control.

  • Use of cookies

    When we provide services, we want to make them easy, useful and reliable. Where services are delivered on the internet, this sometimes involves placing small amounts of information on your device, for example, computer or mobile phone. These include small files known as cookies. They cannot be used to identify you personally.

    • These pieces of information are used to improve services for you through, for example:
    • Enabling a service to recognise your device so you don’t have to give the same information several times during one task
    • Recognising that you may already have given a username and password so you don’t need to do it for every web page requested
    • Measuring how many people are using services, so they can be made easier to use and there’s enough capacity to ensure they are fast.
    • You can manage these small files yourself through your browser settings.


    More information about Google cookies

  • How to control and delete cookies

    We will not use cookies to collect personally identifiable information about you.

    However, if you wish to restrict or block the cookies which are set by our websites, or indeed any other website, you can do this through your browser settings. The ‘Help’ function within your browser should tell you how.

    Alternatively, you may wish to visit www.aboutcookies.org which contains comprehensive information on how to do this on a wide variety of browsers. You will also find details on how to delete cookies from your machine as well as more general information about cookies.

    Please be aware that restricting cookies may impact on the functionality of our website.

    If you wish to view your cookie code, just click on a cookie to open it. You’ll see a short string of text and numbers. The numbers are your identification card, which can only be seen by the server that gave you the cookie.

    For information on how to do this on the browser of your mobile phone you will need to refer to your handset manual.

    To opt-out of third-parties collecting any data regarding your interaction on our website, please refer to their websites for further information.

  • 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.