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Improving the lives of people with

Primary Immune Deficiency

Hello

We are UKPIPS, the Primary Immune-deficiency Patient Support Charity.

We’re here to make sure that anyone with a Primary Immune Deficiency (PID) or a Primary Antibody Deficiency (PAD), their carers and friends, has somewhere to turn to for advice and support.

Our website gives information on the charity and on PID and PAD and their treatments that can be understood by all.

We have informative factsheets covering a variety of subjects that can be viewed  here.

We promise to respect any personal information that we hold and to keep it safe – our Privacy Statement can be viewed  here.

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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

JOIN THE DONOR POOL

On 21st July, NHS Blood and Transplant launched a campaign encouraging those who can to donate plasma for medicines which includes our immunoglobulin replacement therapy. Donation restarted in April after a gap of more than 20 years. There are currently only 8,627 active plasma donors in the network and NHSBT is appealing for another 14,500… Continue Reading

Immunoglobulin Shortages

UKPIPS News for patients on IRT Due to a drop in plasma donations (because of the Covid pandemic) together with an increasing demand for immunoglobulin (year on year), there is a current shortage of some products that is likely to affect us in the UK. UKPIPS has direct reassurance from the NHS that Primary and… Continue Reading

First blood plasma for medicines donations begins

NHS Blood and Transplant  (NHSBT) announce “First blood plasma for medicines donations begins” People will today (Wednesday April 7) donate blood plasma for medicines for the first time in more than 20 years. The plasma will be fractionated and used to make antibody-based medicines – called immunoglobulins – for people with rare immune diseases. NHSContinue Reading

4 NATIONS AGREEMENT ON LIFTING THE UK PLASMA BAN

UKPIPS TRUSTEE STATEMENT – ANNOUNCING THE 4 NATIONS AGREEMENT ON LIFTING THE UK PLASMA BAN   UKPIPS is absolutely delighted to announce that the ban on UK plasma being used for the manufacture of immunoglobulins has finally been lifted, after concerted campaigning over the two years. By lifting the ban (which has been in place… Continue Reading

UK Rare Diseases Framework

The Department of Health and Social Care published the new UK Rare Diseases Framework  on 9th January 2021. The Framework is aimed at raising awareness of rare diseases, speeding up diagnosis and improving care and treatment. It sets out four key priorities for rare diseases in the UK over the next five years, covering: Helping patients… Continue Reading

UKPIPS is a Registered Charity in England, Scotland and Wales – Charity Numbers 1148789 and SCO44636                                        UKPIPS is a Company Limited by Guarantee Number 7957558