Improving the lives of people with
Primary Immune Deficiency
Call for Volunteers and potential Trustees
UKPIPS has been through some trustee changes this year. With Margaret Fuller having retired from the charity, after many years of support as both a trustee and volunteer and with Paul Harries and Erald Kuniqi standing down, we now have a completely new management team comprising David Cohen, Sue Dimmock and Gary Narborough. Sue and… Continue Reading
NHS England – ACCESS TO LATERAL FLOW TESTING/DEVICES IS CHANGING
This is to let you know that if you live in England, from 6th November you will no longer be able to order or receive lateral flow devices by going online or through calling 119. NHSE released the following statement on 31st October: How to get hold of COVID tests If you’re eligible for COVID-19… Continue Reading
Pat McDonald and her Sainsbury’s superstars
UKPIPS would like to send a very big thank you to Pat McDonald and her Sainsbury’s Veterans friends who raised £120 for UKPIPS on 1st August by holding a raffle, bring and buy, tea and cakes morning. As a charity we rely on donations, so fundraising efforts like this are a great help in keeping… Continue Reading
UKPIPS July 2023 Newsletter
Hello to you all, and welcome to the second newsletter from UKPIPS for this year. We hope that you will enjoy it and respond. We will be sending newsletter links to those members who have allowed us to record their email address, and also to our closed Facebook Group. The Newsletter can be read here… Continue Reading
Blood Plasma Donations
A member of the UKPIPS Community, Leanne Preedy, has been interviewed by the Daily Mail. She speaks about the need for immunoglobulin infusions for herself and her daughters. All three have CVID. The article also highlights the supply issues surrounding the infusions and the need for plasma donations. You can read the article on page… Continue Reading
UKPIPS FUNDRAISER (30th June to 2nd July, in Swavesey, Cambridge)
Will you be in the Cambridge area between Friday 30th June and Sunday 2nd July? If so, why not head over to the White Horse Inn in Swavesey where you will find another fun-filled weekend of pinball fundraising for UKPIPS? UKPIPS is very grateful to Jodie and Joe for all their ongoing support to the charity. … Continue Reading
Recording of UKPIPS Community Event, February 2023
Our keynote speaker at this event was Professor Alex Richter, Director of the Clinical Immunology Service, University Hospitals Birmingham. She told those attending the event a little bit about her work, including the COVAD study looking at COVID immunity in antibody deficiency patients, and how she sees the future for immunodeficiency patients during this time… Continue Reading
UKPIPS supports the UK Plasma Donation Campaign
During Plasma Donation Week in April one of our members visited the Twickenham plasma donation centre to personally thank everyone who generously donated. People with immune deficiencies rely on plasma derived therapies to keep them infection free. Immunoglobulin replacement products can be fractionated from both plasma and blood donations from those people who take their… Continue Reading
England Rare Diseases Action Plan
The Action Plan to tackle health inequalities has been published. It seeks to ensure that those living with a rare disease receive better care and treatment, have fairer access to testing and continued support. Rare diseases affect c. 3.5 million people, including the UKPIPS community. The new plan has 13 actions that have been developed… Continue Reading
PIF TICK Toolkit for Healthcare Professionals
UKPIPS is pleased to be included in the new PIF TICK Toolkit, which helps healthcare professionals provide trusted information to their patients. The directory of more than 85 trusted information creators, sorted by therapy area, includes patient-facing factsheets on evidence, spotting false information and BMI. Healthcare professionals can access the toolkit here Published… Continue Reading
UKPIPS January 2023 Newsletter
Hello to you all, and welcome to the first newsletter from UKPIPS for some time. We are hoping to make this a regular feature of the site and hope that you will enjoy it and respond. We will be sending newsletter links to those members who have allowed us to record their email address, and… Continue Reading
UKPIPS Community Event
Our first community event of 2023 will be held on 11th February, 10-12.30 via Zoom. You will hear from our guest speaker, Dr Alex Richter, and from UKPIPS volunteers and trustees. If you have not received information about this event, please contact admin@ukpips.org.uk or visit our Facebook page. Published 17th January 2023 Continue Reading
UKPIPS is grateful for the support of Takeda