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January 16 2018
Awareness, In the News

Researchers build immune systems for kids with 'Bubble Boy' disease

POSTED BY: rdelaney

A new type of gene therapy pioneered at St. Jude Children's Research Hospital appears to build fully functional immune systems in babies born with the so-called "Bubble Boy" disease, offering hope of a permanent cure for kids who otherwise might die before their second birthdays. Click here to read the full article.

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December 13 2017
Advocacy, Awareness, Healthcare Reform, Medicare, Patients, PI, SCID

IDF State Advocacy in the New Year

POSTED BY: rdelaney

IDF State Advocacy in the New Year With the new year approaching, many state legislatures will convene to consider thousands of potential new laws. IDF will continue its state policy work during the upcoming legislative sessions by focusing on efforts in multiple states addressing barriers to medication access, including Iowa, Massachusetts,

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December 13 2017
Awareness, Community, Events, Fundraising, Patients, PI, Walk for PI

IDF Walk for PI 2017: Thank You!

POSTED BY: rdelaney

Thank You to Those Who Walked with Us As the year ends, so does the IDF Walk for PI 2017 season. This year’s walks were successful and brought together our IDF community, and we owe it all to you: our walkers, donors, volunteers, sponsors and all who helped support the walks. Your efforts allow IDF to keep taking steps forward towards a better

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December 13 2017
Community, Patients, Research

Participate in the IDF Fever Study

POSTED BY: rdelaney

Participate in the IDF Fever Study: Coming Early 2018 IDF has an exciting research project that developed from discussions in the IDF PI CONNECT Research Forum and IDF Friends. Many individuals with PI report having a lower than normal average body temperature. As a result, when they do have signs of an infection, frequently their temperature

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December 13 2017
Awareness, Community, Patients

Since You Asked: Question & Answer (December 2017)

POSTED BY: rdelaney

  These Questions & Answers originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe. Question 1: TamifluQuestion 2: Family & Medical Leave Act  Question: I have Specific Antibody Deficiency (SAD) and am concerned that I will get the flu despite getting vaccinated. If I do get the flu am I

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