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Remembering Sara LeBien

It is with great sadness that the Immune Deficiency Foundation (IDF) shares the news that Sara LeBien died January 14, 2018.

Sara and her husband Bob were integral in the founding of IDF. They, like the other families and physicians involved in the early days, saw the need for a national organization dedicated to improving the diagnosis and treatment of people with primary immunodeficiency diseases (PI) after their son Mike was diagnosed.

IDF Online Donation - CURRENT 2018

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Select "Monthly" to Become a Member of IDF's President's Club! Members of the President’s Club receive special recognition and exclusive updates from IDF.

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IDF State Advocacy in the New Year

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, Michigan, Nevada, New Jersey, Ohio, Oregon and Pennsylvania. 
 

Participate in the IDF Fever Study

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 does not rise to 100.4°F, the threshold upon which doctors begin to prescribe antibiotics. If this occurs, patients who have infections may not receive critical antibiotics due to missed signs of fever.

Interested in Participating in an IVIG Study?

IVIG Study Opportunity

The CIIC (Consortium of Independent Immunology Clinics) is currently conducting an IVIG study for a 12-month period. They are looking to enroll children ages 2-16 for the study.

  • The study will cover the costs of the IVIG 
  • Participants will also receive a stipend for each visit to the clinic

This is an immediate opportunity for people in the following areas:

Fairfax, VA

Plymouth, MN

Planning for the Future: Immune Globulin Potency in the 21st Century Workshop

The Immune Deficiency Foundation, in cooperation with the Center for Biologics Evaluation and Research (CBER) of the Food and Drug Administration (FDA), the Plasma Protein Therapeutics Association (PPTA), and the National Institute of Allergy and Infectious Diseases (NIAID), participated in the Workshop on Immune Globulin Potency in the 21st Century, November 8-9, 2017.

Mission Possible Award Winner: Nefar Moran

Although Nefar Moran is new to the primary immunodeficiency (PI) community, her experience participating in IDF Walk for Primary Immunodeficiency Boston has been extremely rewarding, and she has gone above and beyond to raise funds for the Immune Deficiency Foundation (IDF).

This past walk season, Nefar was a member of Team Shire, led by Team Captain Kate Fladhammer. Nefar was inspired by Kate, who was diagnosed with primary immunodeficiency disease (PI) at a young age and has been an active member of the community for many years.

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