Resource Library

Feel free to take a look through our various resources including:

Press Releases

World Primary Immunodeficiency Week (WPIW) 22nd – 29th April 2014

Primary Immunodeficiency Disease (PID) is a rare condition whereby patients cannot fight off infections or viruses due to a compromised immune system.  There are over 250 types of PID and, compared to international statistical data for incidence of PID, South Africa has a fraction of the number of patients diagnosed. …

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Position Statements

PINSA POSITION STATEMENT ON ACCESS TO IMMUNOGLOBULIN THERAPIES FOR PATIENTS LIVING WITH A PRIMARY IMMUNODEFICIENCY

July 2014 This PiNSA statement supports international calls to ensure access to the best suited immunoglobulin (IG) replacement therapy, as prescribed by physicians for patients living with a primary immunodeficiency (PID)[1] that requires IG replacement therapy. It is estimated that there are between 20,000- 40,000 South Africans living with PID,…

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IPOPI POSITION STATEMENT Access to Immunoglobulin Therapies for patients living with a Primary Immunodeficiency

8 May 2012 This statement is intended to provide a summary of IPOPI’s position with regards to the importance of ensuring access for patients living with a primary immunodeficiency (PID) to the best suited immunoglobulin (IG) replacement therapy, as selected and prescribed by their physician. IPOPI is concerned by recent…

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Guidelines

Meeting Reports

Western Cape Social Meeting: thanks to Dani Guignet and Heidi Hudson- Bennett

Western Cape Social Meeting: thanks to Dani Guignet and Heidi Hudson- Bennett World PI Week Cape Town Lots of PID Kids PID Moms PID Dads Gordon and Gaby giraffes joined the party!

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REPORT:EURORDIS Summer School for Patient Advocates in Clinical Trials and Drug Development

Page Contents1 SECTION 1: THE EVENT2 SECTION 2: PROGRAMME3 SECTION 3: EVALUATION 4 SECTION 4: RECOMMENDATIONS5 SECTION 5: CONCLUDING REMARKS6 ACRONYMS7 Organisation for Economic Co-operation and Development 29 June 2012 SECTION 1: THE EVENT Introduction A capacity building programme for patient representatives involved at the European level in the development,…

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REPORT: Healthcare in Africa 2013-The Patients Perspective

Page Contents1 SECTION 1: THE EVENT1.0.1 Introduction2 SECTION 2: PROGRAMME AS PUBLISHED2.0.1 FLASH OF INSIGHT: PUTTING THE PATIENT AT THE CENTRE – WHY IT MATTERS IN GLOBAL HEALTHCARE2.0.2 THE BIG DEBATE: IS PATIENT-CENTRIC HEALTHCARE RELEVANT TO AFRICA?2.0.3 CASE STUDY: EMPOWERING COMMUNITIES – HELPING PATIENTS HELP THEMSELVES2.0.4 PRESENTATION: PATIENTS AND THE…

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Patient Toolkits

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