UKPIPS

UKPIPS
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UKPIPS (registered charity no: 1148789) has been set up to provide information, advice and support to people living with a Primary Antibody Deficiency (PAD) or any other Primary Immune Deficiency (PID). It has the following key objectives:• To provide information, advice and support• To promote early diagnosis. Currently, this can be at least five years – and often more.• To promote social welfare• To offer advocacy• To increase awareness of these conditions• To promote the provision of appropriate medical treatment.• To encourage research into psychological, emotional and practical needs• To support the rights of people living with a PAD or PID so they may participate fully in employment, education and decisions about their medical treatment• To ease the social isolation of people living with these conditions – and those who care for them.

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There is currently little support or information for people living with a primary antibody deficiency in the UK, with many people often suffering from extreme ill health for a number of years

Liz Macartney, UKPIPS

people living with a primary antibody deficiency go undiagnosed for five years. This delay in receiving appropriate treatment leads to irreversible damage of the lungs and other organs. On a psychological level, it can have devastating effects on their relationships, work life and day to day living

Liz Macartney, UKPIPS

We are so pleased that some of the major pharmaceutical companies are attending our meeting to discuss the work of UKPIPS in raising awareness of these diseases and in supporting those who live with a PAD

Liz Macartney, UKPIPS

My son needs a specialist drug called polyglobin. While this has been approved for other patients in England, the Belfast Trust in NI are refusing to pay for it as they say it is unlicenced

Lorraine Croskery

Without the polyglobin Curtis will not grow or develop properly as he is unable to retain adequate nutrition due to constant sickness and diarrhoea. His physical and mental development will be permanently stunted and he may die if this disease is not stopped

Liz Maccartney, Trustee of UK PIPs

There is also a lot of misunderstanding of the condition, including even the basic principles of caring for a patient with a compromised immune system

Liz Macartney, UKPIPS Co-ordinator & Trustee

By using World Primary Immune Deficiency Week as a way to showcase our organisation to immunology centres, we are anxious to further help promote awareness of our organisation to both patients and the medical profession

Liz Macartney, UKPIPS Co-ordinator & Trustee

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New charity and pharmaceuticals come together to raise awareness of immune deficiency diseases

Mon, Nov 12, 2012 15:25 CET

A new charity - UKPIPS (United Kingdom Primary Immune-deficiency Patient Support) - and some of the leading UK pharmaceutical companies are set to discuss the support, treatment and diagnosis of people living with a Primary Antibody Deficiency (PAD), and other Primary Immune Deficiencies (PID)A Primary Antibody Deficiency is where the immune system cannot make antibodies and means that something like the common cold or a ‘flu bug, which a person with a normal functioning immune system will eventually shake off, can seriously cause damage to a person with a PAD – even to the point where it

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New charity and pharmaceuticals come together to raise awareness of immune deficiency diseases

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