Privacy Notice

PKD International (PKDI) understands that your privacy is important to you and that you care about how your personal data is used. We respect and value the privacy of all of our customers, suppliers, staff and other stakeholders. We will only collect and use personal data in ways that are described here, and in a way that is consistent with our obligations and your rights under the law.

About Us: PKD International (the “Association”)  is a non-profit, non-governmental association, registered in Switzerland, which carries out its activities internationally. PKD International owns this website www.bumppkd.com.

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 General Data Protection Regulation (EU Regulation 2016/679) (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. Please contact us to find out more.
  • 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. Please contact us to find out more.
  • 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.

Further information about your rights can also be obtained 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.

What Personal Data Do We Collect? We may collect some or all of the following personal data (this may 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
  • Online identifier (IP address)

The Association does not collect special category or sensitive data as a matter of course.

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)
  • When you place an order with us
  • When you register for and/or attend a Association event

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. Your personal data will be used for one of the following purposes:

  • Internal record keeping.
  • Providing our services to you.
  • Providing goods and services that you have purchased.
  • Personalising and improving our products and services.
  • 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 and news about our products and services.

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 it was first collected. Your personal data will therefore be kept for as long as we have a relationship with you or ongoing business reason (for example, to comply with applicable tax, accounting or legal requirements) in accordance with our data protection and retention policies. At the end of the relevant period, we’ll make sure your data is deleted or anonymised.

The retention period schedule will be reviewed every 3 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 bumppkd.com 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 Association 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 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.

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 in Part 8.

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 (where any such personal data is held). 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. You will be kept 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.

How to Contact Us

PKD International, 24 Rue Le-Royer, 1227 Geneva, Switzerland.

PKD International is a global network of patient organisations dedicated to advocating for patients and families affected by all forms of Polycystic Kidney Disease (PKD). PKD International is a non-profit, non-governmental association registered in Geneva, Switzerland.

www.pkdinternational.org