Privacy Policy

Pseudo Obstruction Research Trust (PORT) Privacy Policy

1. Who we are

Pseudo Obstruction Research Trust (PORT) is the UK charity funding research into a rare digestive illness, Chronic Intestinal Pseudo Obstruction. PORT has a support network via our private members Facebook page

In carrying out our work we collect and use personal information about individuals. We recognise the trust placed in us by individuals whose information we use. It is important to us that we are open and honest about the way we use information and we are committed to ensuring that we do so in a manner that is both lawful and respects your privacy.

Pseudo Obstruction Research trust (PORT) is a registered charity in England and Wales (1114217).

You can change how we contact you at any time, by sending an email to or calling us on 07939 885699.

2. What data we collect and how we use it

The type and quantity of data we collect and use depend on why you have provided it.

We will only collect, use and otherwise handle your personal data:

* where you have consented to this for specified, explicit and legitimate purposes

* where this is necessary to fulfil legal obligations that apply to us

* where it is necessary for our legitimate interests relating to running our daily operations, as long as, in each case, these interests are in line with applicable law and your legal rights and freedoms.

2.1 Family Community

PORT Charity runs an information and support network via a private Facebook members page. PORT also send out our information booklet upon request, this can also be emailed.

We will store your contact details if permission has been granted.

This information will only be used for the purposes of the service and not for any other purpose unless you give us permission to do so.

We will hold the data for up to two years after the end of the service, at which time it will be deleted.

2.2 Members Support

PORT Charity operates an information and support network via a private Facebook members page.

2.3 Family case studies

Some families share their stories with us about their experiences living with chronic intestinal pseudo obstruction/dysmotility to help PORT raise awareness of the illness for our fundraising. This sometimes includes health related details, we record the details of the story.

The safety of children is paramount to us. If we display a child’s story we do not display their personal or contact details.

Children’s stories are only made public following parental consent, or if of age the consent of the individual.

We will keep this data for three years after you give it to us and will always contact you each time we wish to use it.

2.4 Photographs

Families and supporters kindly let us use images and video content of them to help raise awareness of Chronic Intestinal Pseudo Obstruction/Dysmotility to help with fundraising.

These images stored in a secure location and will only use them with the subject’s permission.

We keep these images for three years after we have been given them unless you ask otherwise.

2.5 Supporters

If you support us, for example by signing up to an event, donating or signing up to a campaign, we will usually collect your name, contact details, and whether you would like to be contacted, and how we would do so.

We use this information to thank you for supporting us and to provide you with further communications about our activities according to your preferences and interests. We also use it to fulfill our legal responsibilities for financial and Gift Aid reporting.

We will keep your data only for as long as necessary. If you have kindly donated to us, we are required to keep this data for seven years. If you have not donated to us, we will only keep your data for three years.

3. Who we share your information with

Unless we are required to share your data for legal or regulatory reasons, we will never share your data with other organisations.

We do use third-party organisations to help us collect donations such as Virgin Money Giving, and the Charities Trust, to help us fulfill our marketing.

If you have made a gift aid declaration we will share your name, address and donation details with HMRC.

4. Keeping your data safe and up to date

We ensure that the most appropriate technical controls are in place to keep your data safe. Access to your data is regularly reviewed and only accessible to the relevant volunteers.

5. Website and emails

Any contact via email is protected by antivirus software. We may obtain your personal data through the use of social media such as Facebook, Whats App, Youtube, depending on your settings, or the privacy policies of these social media and messaging services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.

6. Your rights

We will only collect the data that we need to carry out the purposes you have contacted us for or given us permission to use it for.

Where you have provided consent to be contacted or to receive a service, you will be entitled to withdraw that consent at any time.

If you are at any point unhappy with the way that we handled your personal data, you can make a complaint to the Information Commissioner’s Office.

To make changes to how we contact you, please contact

7. Changes to this policy

We may change the terms of this privacy statement from time to time. If we do so, we will post the changes here so please check from time to time.

Pseudo Obstruction Research Trust (PORT) Renumeration policy


PORT has no Full or Part Time staff and does not pay salaries to anyone. The Charity is run voluntarily by trustees.


PORT Trustees are not paid for their work as a trustee.

Trustees and Expenses

Trustees can be reimbursed for reasonable out of pocket expenses such as travel costs to Charity conferences, functions, meetings, etc.

Where travel is by rail a valid ticket receipt must be presented with a claim.

Where travel is by car, mileage parking fee & tolls should be receipted.

In the event of Overnight accommodation being required a trustee must check with PORT first to see if the Charity is willing to fund this.

In the unlikely event that a Trustee is requested to complete work for the Charity they may be paid for undertaking special work for the charity, provided that this meets the criteria of the Charity Commission guidance “Payments to Charity Trustees – What the Rules Are”. However, PORT will generally avoid engaging its trustees for such work and will only do so where there is no suitable alternative supplier of that work.

Any expenses to individual trustees would be disclosed within PORT annual accounts.

PORT Renumeration v1.0518