Improving the lives of people with

Primary Immune Deficiency

Join Us

Volunteering is a marvellous way to ‘give something back’ to society – and UKPIPS always needs volunteers and for the simple fact that if we didn’t have those kind people we almost certainly wouldn’t exist!

All of us have skills of some sort and those skills can very often be used or adapted for the work we do. Be assured, volunteering for UKPIPS doesn’t have to be something that makes major inroads into your time. In many cases, you can do it ‘as and when’.

Here are some examples:

  • Perhaps you have computer skills and would be able to compile a newsletter, write an article or an information bulletin of some sort?
  • Would you be willing to be part of a user group to evaluate new leaflets for ease of reading and understanding? All our leaflets have to conform to The Information Standard and we can’t publish them at all until they have been passed by a patient User Group as being easy to read and understand and with no medical jargon.
  • If you’re a whizz at spreadsheets or like playing with numbers, there’s always a research project we could discuss with you.
  • We hold Patient Days across the country each year and are always on the lookout for people who are happy talking to a group of strangers about their own journey with primary immune deficiency. Would you like to do that?
  • Maybe you’ve been a patient for some years and have a lot of knowledge about how your immune deficiency affects you? Would you be willing to give a morning or afternoon say once or twice a month in going to your immunology clinic (with the Clinic’s prior knowledge and approval) and talking to patients while they infuse? This is particularly important for people who have been newly diagnosed and who may have lots of questions. Many of them may not have heard of UKPIPS so you could tell them about us and if they’ve got particular worries you can’t answer yourself and feel we should be involved, you could then either call us or send an email alerting us to the concern.
  • In each immunology centre, we have things called Leaflet Libraries. They are large ring binders with plastic pockets inside and each pocket contains a specific leaflet. Too often, nurses are so busy that they don’t have the time to check which leaflets need to be re-ordered and this is something you could do.

This is by no means an exhaustive list of things volunteers could do and subject to prior approval from UKPIPS you could well be entitled to the reimbursement of reasonable expenses incurred while volunteering for us.