Our contact details

Name: PNH Support, Charitable Incorporated Organisation (no. 1161518),

Address: c/o 4 Buckland Road, London, E10 6QS

Email: contact@pnhuk.org

The type of personal information we collect

We currently collect and process the following information:

Information about you:

  • when you consent to receive updates from us. We collect your name, email address and whether you are a patient or carer/family member when you consent to hear from us with updates including patient meetings and events.
  • when you are a contracted supplier to PNH Support or
  • when you apply to be a trustee
  • when you consent to be a member of PNH Support. We collect the following personal data about you: your name, postal and email addresses, whether you are a patient/ family member/carer, the date you become a member and cease to be a member of PNH Support. We need to hold this data to comply with our obligation under The Charitable Incorporated Organisations (General) Regulations 2012 to keep a “Register of Members” which includes your name, postal address, the dates you become a member and cease to be a member.
  • when you make a donation to PNH Support. When you give a donation you provide your email address and possibly your postal address for Gift Aid purposes. This information may be shared with HMRC to collect Gift Aid.
  • when you register to attend an event hosted by PNH Support. We collect information relevant to your attendance at an event including name, address, email address, phone number.

We will not collect any personal data from you which we do not need in order to do the things set out above.

How we get the personal information and why we have it

Under the UK General Data Protection Regulation (UK GDPR), the lawful basis on which we rely for processing this information is your consent to do so. 

What we do with your information

The personal data we hold is processed by PNH Support in the UK. For the purposes of IT hosting and maintenance this information is located on servers within the UK. No third parties have access to your personal data unless the law allows them to do so.

How we store your personal information 

Your information is securely stored. 

We have an Information Governance Policy in place to ensure the effective and secure processing of your personal data which you can request to see.

How long we keep your information

Information about you when you consent to receive updates from us

We will keep your personal data in order to send you updates until you ask us not to or until the purpose for which the personal data was collected to complete e.g. until after the event you are attending.

Membership information

We will keep your personal data as long as you are a member of PNH Support and for a period of 10 years from the date which you cease to be a member (in order to comply with Schedule 1, Part 1 of The Charitable Incorporated Organisations (General) Regulations 2012).

Contracted suppliers

Under current HMRC rules we are required to retain details of any supplier payments for six years after the date of the provision of services.

Donation information

Under current HMRC rules we are required to retain Gift Aid declarations and details of any gifts for six years after the date of the last gift to PNH Support.

Your data protection rights

Under data protection law, you have rights including:

Your right of access – You have the right to ask us for copies of your personal information. 

Your right to rectification – You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete. 

Your right to erasure – You have the right to ask us to erase your personal information in certain circumstances. 

Your right to restriction of processing – You have the right to ask us to restrict the processing of your personal information in certain circumstances. 

Your right to object to processing – You have the the right to object to the processing of your personal information in certain circumstances.

Your right to data portability – You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.

You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.

Please contact us at contact@pnhuk.org if you wish to make a request.

ICO reference number: ZB931217 

How to complain

If you have any concerns about our use of your personal information, you can make a complaint to us at contact@pnhuk.org.

You can also complain to the Information Commissioners Office (ICO) if you are unhappy with how we have used your data.

The ICO’s address:            

Information Commissioner’s Office

Wycliffe House, Water Lane, Wilmslow, Cheshire, SK9 5AF

Helpline number: 0303 123 1113

ICO website: https://www.ico.org.uk