Privacy Policy

Privacy Policy

As published 10th May 2017

PTEN Research Foundation is registered as a private company limited by guarantee under registration number 10529899 (“PTEN Research” or “we”).

PTEN Research is committed to ensuring that your privacy is protected. This privacy policy sets out how we use and protect any personal information that we collect about you. Should we collect certain information by which you can be identified, you can be assured that it will only be used in accordance with this privacy statement.

By interacting with our website and related services (such as PTEN Research’s social media) you agree to the use of your information in accordance with this privacy policy. PTEN Research may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. Any new policy will be effective from the date it is published by us.

This policy is effective from 10th May 2017.

What we collect

We will collect information in the following ways:

  • Information you give us: For example, when you engage with our web form or social media, or if you register to receive marketing communications from us;
  • Information we get from your use of our website and services: We collect information about the services you use and how you use them, like when visit our website or interact with our social media posts;
  • Information from third parties: We, like all companies, are able to confirm what browser you are using, IP address and computer operating systems that are being used and this information may be used to improve the services we offer.

 We may collect the following personal information about you:

  • Name;
  • Contact information (including email address and postal address);
  • Date of birth;
  • Your category (for example, family, PHTS patient, clinician, researcher, other);
  • Other information relevant to your reason for contacting us;
  • Technical information related to your use of our website and related services.

We may collect certain “sensitive personal information”, for example information about your physical health or condition where you choose to tell us this. Where we do so we will only do this with your knowledge and we will only use this data for the purpose that you are giving it to us.

Why do we collect your information?

We collect your information in order to:

  • provide our website to you;
  • record feedback and optimise our website and our services;
  • to communicate with you, for example to inform you about our fundraising events and the work of PTEN Research;
  • to build a body of knowledge about PHTS, research into PHTS and associated medical support;
  • to conduct research;
  • to maintain records; and
  • to protect our legal rights.
What do we do with the information we gather?

Any personal information you send to us via this website will be collected and stored. For example:

  • If you sign up for our email newsletter we will send you a regular email containing the latest fundraising and news from PTEN Research;
  • If you email us we will respond using the contact details you provide.

If you do not wish to receive our marketing messages please notify us by email to . However, we will keep a record of your information on an “unsubscribed list” to make sure we do not contact you again.

You consent to the transfer of your personal information to, and the collection and processing of such information in, other countries or territories. If your personal information is transferred to a third party country we will ensure that they have suitable safeguards to protect your information. Please contact us on the email address above if you would like a copy of the applicable safeguards.

We do not use any form of automated process to make decisions about you based on your information.

Information sharing

We may send your information to third parties or receive information about you from third parties in situations where third-party agencies are providing services on our behalf.

Alternatively, we may give your postal address to a mailing house so that they can send you a letter from us. We have agreements in place with these agencies to ensure that your data is kept confidential and is only used for the purpose it was intended.

In some cases, we may be required to disclose your personal information to comply with legal requirements and requests from government agencies, or to protect the rights, property, or safety of PTEN Research, our users, or others.

We will not share any sensitive personal data about you, including information about your physical health or condition, unless you have given us your explicit consent to do so or we are required to do so by law.

We may share your data with third parties on an anonymous and aggregated basis, meaning you could not be personally identified from it.


We are subject to applicable UK law relating to data protection. We will ensure your information is safe and managed appropriately. Personally identifiable information is stored on our servers and is not publicly accessible.

In order to prevent unauthorised access or disclosure we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.

Any information you send to us over the internet is encrypted using secure socket layer technology (SSL). While we take the necessary steps to make your information safe, please keep in mind that no method of transmission of data over the internet is 100% secure, although we shall notify you if there is a data breach which is likely to result in a high risk to your rights and freedoms.

Controlling your personal information

Once we have collected your information we will continue to store it only for as long as is necessary for fulfilling the purposes specified in this policy.  You may choose to control the content or use of your personal information by asking us to:

  • Rectify inaccurate personal information;
  • Send to you a copy of the personal information that we hold about you in a commonly used format such as a word document;
  • Erase personal information which you would no longer would like us to store; or
  • Tell you the names of the third parties to whom your information has been shared with.

To exercise these rights we require you to prove your identity with two pieces of approved identification. Please address requests to and we shall respond within 40 days of receipt of your written request and confirmed ID. We reserve the right to charge a fee of £10 for this process with a further reasonable fee where a request is manifestly unfounded or excessive or repetitive.

If you would like to complain about our practices or how your information has been handled you can contact the Information Commissioner’s Office on their helpline: 0303 123 1113.

Keeping records

We shall keep records of our information collecting practices for as long as required in accordance with legal requirements and tax and accounting rules.