PNH Support, a Charitable Incorporated Organisation (no. 1161518), c/o 4 Buckland Road, London, E10 6QS is the ‘Controller’ of the personal data you provide to us. 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.
The legal basis upon which we hold your data
We will hold your personal data if you consent to provide it to us.
Why we need this information
We need to hold your personal data in order 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.
– send you relevant information about membership of PNH Support including information about Annual General Meetings, newsletters, events, meetings and opportunities to use your lived experience in various ways including taking part in market research and becoming involved in the medicines research and development process.
We will not collect any personal data from you which we do not need in order to do the things set out above.
What we do with your information
All the personal data we hold is processed by the Trustees of PNH Support in the UK. For the purposes of IT hosting and maintenance this information is located on servers within the European Union. No third parties have access to your personal data unless the law allows them to do so.
We have an Information Governance policy in place to ensure the effective and secure processing of your personal data.
How long we keep your 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).
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.
What are your rights?
If at any point you believe the information we process about you is incorrect you can request to see this information and also have it corrected. If you wish to raise a complaint about how we have handled your personal data, you can contact a Trustee of PNH Support and we will investigate the matter. Please contact us at: firstname.lastname@example.org
If you are not satisfied with our response or believe we are not processing your personal data in accordance with the law you can complain to the Information Commissioner’s Office (ICO).