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July 25 2018
Awareness, Research

Importance of Participating in Surveys and Research

POSTED BY: kmcmahon

A major focus of the Immune Deficiency Foundation (IDF) has always been to better understand patient experiences and improve outcomes for people with primary immunodeficiency diseases (PI). Since IDF mailed Primary Immune Deficiency Diseases in America: The First National Survey of Patients and Specialists in 1995, the tools used to conduct

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July 25 2018
Awareness, Research

IDF National Health Insurance Surveys

POSTED BY: kmcmahon

Primary immunodeficiency diseases (PI) are a group of more than 350 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. Recent history suggests that even small changes to healthcare or health insurance policies can have a negative impact on those with PI. With the passage of the 2010 Patient

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July 25 2018
Awareness, Research

History of IDF Survey Research

POSTED BY: kmcmahon

For nearly 25 years, the Immune Deficiency Foundation (IDF) has provided timely data and analysis on issues of importance to the primary immunodeficiency community (PI). The critical nature of this quantitative data, collected from national surveys of patients and healthcare professionals, directly contributes in helping IDF fulfill its mission

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July 05 2018
Awareness, Community, Events, Family, Fundraising, Walk for PI

Why should you walk for PI?

POSTED BY: kmcmahon

It all started in 2013. Three walks in three cities across the country: Philadelphia, Los Angeles and Chicago. Members of the PI community wanted a way to create awareness about primary immunodeficiency diseases (PI), and IDF Walk for PI soon became their answer. 2013 IDF Walk for PI - Los Angeles Each year the walk grew and expanded—soon

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June 29 2018
Awareness

Since You Asked: Question & Answer (June 2018)

POSTED BY: rdelaney

These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe. Question 1: Starting Ig TherapyQuestion 2: Finding Health Insurance that Covers Ig Therapy Question: I have been tested a few times and my IgG levels are under 20, yes double digits! I have had a lung infection for

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