Improving the lives of people with

Primary Immune Deficiency

Joint Charity’s Letter about the decision-making process on Evusheld to the Secretary of State for Health and Social Care

UKPIPS is a joint signatory on an open letter to the Secretary of State for Health and Social Care. It calls on the Government to be open about the decision-making process on Evusheld and enable the immunocompromised to ‘live with Covid’ on a level playing field with everyone else. The letter was signed by 18… Continue Reading

UKPIPS achieves quality mark for its information processes

UKPIPS is pleased to announce that it has been recognised by PIF TICK as a “trusted information provider”. We have met 10 criteria that shows our Factsheets and other information follow a rigorous process, are accurate, up-to-date and accessible. You can read more about the PIF Tick award here, and can visit their website here… Continue Reading

Our thanks to the White Horse at Swavesey

Joe Bonson and his partner Jodie Lath run ‘The White Horse’ at Swavesey. They hold regular charitable events, one of which is an annual Pinball Machine Event  run by regular Mark Squires. This years event raised a staggering £1300.70 which was donated to UKPIPS. We were chosen as beneficiary because Jodie has a primary immunodeficiency… Continue Reading

What’s Covid been like when three out of four of your family’s members have CVID?

Read one member’s story of living with CVID and Covid and the significant impact that lifting of Covid restrictions had on the family here Published 6th July 2022 Continue Reading

Learning To Live With Covid When You’re Immunodeficient

On 26th April 2022, Lynda Rhodes and Sue Dimmock took part in a series of UK radio interviews to coincide with World PID Week 2022.  The topic this year was Learning To Live With Covid When You’re Immunodeficient, and this covered a variety of topics including #   how the removal of all Covid restrictions is… Continue Reading

Second Anniversary of COVID

UKPIPS is supporting National Voices in their shared statement on the second anniversary of UK Covid lockdown. We take this time to remember everyone who lost someone during the pandemic and anyone who’s health has suffered through the pandemic. Read our shared statement here:   Published 25th March 2022 Continue Reading

It’s not Freedom Day but Forgotten Day for some

Following the PM’s announcement on removal of Plan B Restrictions and self-isolation, UKPIPS is asking the Government to establish a clear path to Covid preventative treatment for those who have an immune deficiency,  and who feel  “isolated”,  “forgotten” and “discriminated against”. These adults and children have not been able to live a ‘normal’ life for 2… Continue Reading

UKPIPS Writes to the Secretary of State for Health and Social Care

The UKPIPS Community is concerned about the significant impact of removing Plan B restrictions for people living with an immune deficiency. The attached letter was sent to the Secretary of State on 29th January 2022.  In a follow up email on 14th February, Sue Dimmock on behalf of UKPIPS asked  “What is the Government actively… Continue Reading


On February 28th it is Rare Disease Day – across the world there are over 300 million people with rare diseases, including CVID and other PIDs. Rare Disease Day is the official international awareness-raising campaign for rare diseases. Its objective is to raise awareness amongst the general public and decision-makers about rare diseases and their… Continue Reading

COVID 19 Guidance at January 2022

The latest advice for people who are immunocompromised can be found on the website here Published 20th January 2022 Continue Reading

NHS Blood Donor and Transplant Campaign

UKPIPS is delighted to support the NHS Blood and Transplant Campaign to increase the number of plasma donors in the UK. Some of the UKPIPS Community members have told their stories to the media. You can see and read them by following the links below. Please watch Simone Simon’s two videos here and here,  and… Continue Reading