New patient based group highlights immunodeficiency diagnosis and treatment gaps, and provides support
UKPIPS (United Kingdom Primary Immune Deficiency Patient Support) is a new national patient-run and patient-lead organisation dedicated to people with Primary Antibody and Immune Deficiencies and their carers. It offers them information, advice, support and hope. UKPIPS is currently seeking charitable status and has a highly regarded Medical Advisory Panel.
To coincide with World Primary Immune Deficiency Week, Liz Macartney, Co-ordinator and a Trustee of UKPIPs, comments: “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 – or even decades – before they are diagnosed.
“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.
“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. This is why we are so pleased to be attending the Educational Symposium for Clinicians and Patients at the Russell Hotel in Bloomsbury, London WC1B 5BE on 21st April for World Immunology Day 2012.
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For more information on UKPIPS, please visit: www.ukpips.org.uk
For information on World Primary Immune Deficiency Week, please visit: www.worldpiweek.org
Contact: Liz Macartney, UKPIPS Co-ordinator & Trustee, UKPIPS telephone: 07531 076409, Email: ukpips3@gmail.com
About UKPIPs:
UK PIPs 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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