The change of identity from PID UK to Immunodeficiency UK

You may have questions about our new organisation Immunodeficiency UK and how it will differ from PID UK. We hope the following questions and answers will help.

Q. Why has PID UK become a new charity?

A. GD UK created PID UK in 2013 with money raised from Jean fro Genes to provide support to the primary immunodeficiency community.  PID UK has grown to be the leading patient organisation for individuals and families in the UK affected by immunodeficiency conditions.  When GD UK was reviewing its future, it was felt this was a good time for PID UK to move forward as an independent charity with its own board of trustees.

Q. Why has PID UK changed its name?

A. PID UK stands for Primary Immunodeficiency and the charity recognised a need to also support people with secondary immunodeficiency conditions. After some thought, it was decided that simply Immunodeficiency UK was the more appropriate name. Our Charity Number is 1193166.

Q. What is the difference between PID UK and Immunodeficiency UK?

A. Everything that PID UK did before it will continue to do, but for both primary and secondary immunodeficiency patients.

Q. Will I notice any difference to the services I receive?

A. No. 

Q. Has the team changed?

A. Dr Susan Walsh who ran PID UK will be the Chief Executive of Immunodeficiency UK.  She is assisted by three trustees, Dr Matthew Buckland (Chair of Trustees and Medical Advisory Panel) and Hannah Bruce (Patient Advisory Panel) and Lisa Gagliani, the former interim CEO of GD UK. Susan will also be supported by Jen Rush who joins part time (10 hours/week) to run marketing, fundraising and provide administrative support.

Q. I was a member of PID UK. Am I already a member of Immunodeficiency UK?

A. This cannot happen automatically. In compliance with GDPR we need to ask permission of existing members of PID UK to transfer over the data we hold so they can become a member of Immunodeficiency UK. To give consent for your data to be transferred please email hello@piduk.org before the 31st March   If you want to re-join as a member please email us at hello@immunodeficiencyuk.org. This will mean that you will be kept informed about our work with regular updates.

Q. How do I become a member of Immunodeficiency UK?

A. If you give your permission for the transfer of data, as above, then you will automatically become a member of Immunodeficiency UK.  For those wanting to join after the 1st April a new membership registration system will be available from the 1st April. 

Q. Is the PID UK helpline still running? How do I access it?

A. Yes. Our phone helpline service can be accessed at 0800 987 8986.  Email enquiries until the 31st March should be sent to hello@piduk.org. From the 1st April please use hello@immunodeficiencyuk.org.

Q. Is GDUK still involved in Immunodeficiency UK?

A. No, the trustees of GDUK have handed over Immunodeficiency UK to the new board of trustees; effective 1st April 2021.

Q. I have a standing order/direct debit set up with PID UK. What will happen to that?

A. We hope that you will want to keep supporting the work of the new charity Immunodeficiency UK but, of-course, you can choose to cancel your standing order/direct debit mandate at any time.

The PID UK bank account into which your donation is currently made will remain open during a long transition period until a new Immunodeficiency UK bank account is fully operational and the funds of PID UK have been transferred over to Immunodeficiency UK.  We have recently been advised that the process of setting up the new Immunodeficiency UK account will take up to 12 weeks and we will contact you as soon as we have the new bank account details so you can change your payment instructions. We truly value your regular giving as a means of supporting our work for the community.

Q. Will the contact details change?

A. You can call us on 0800 987 8986 and leave a voicemail.
Email us: hello@immunodeficiencyuk.org after the 1st April.
Write to us: PID UK, PO Box 12635, Colchester, CO7 5AN

Q.  Will the website be different?

A.  We are working on a brand-new website for Immunodeficiency UK but until then the existing PID UK website will be re-branded to reflect our new identity on the 1st April.  Any PID UK website traffic will be directed to this website address www.immunodeficiencyorg.uk from the 1st April.  Our aim is to ensure that all the resources we currently have available, remain available to the community. Please bear with us whilst we work through the changes needed.