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IDF Winter 2019 ADVOCATE Newsletter

This is the Winter 2019 edition of the IDF ADVOCATE Newsletter. IDF's hard-copy newsletter published two times a year and mailed to over 30,000 individuals nationwide.

Click here to download past editions.

Currently, IDF does not ship publications outside the U.S. We welcome those from outside the U.S. to choose the online (PDF) version of the publication.


PI Community Represented at Senate Committee Hearing on Preventable Diseases and Vaccines

On Tuesday, March 5, 2019, the Senate Committee on Health, Education, Labor and Pensions held a hearing to discuss the recent outbreak of preventable diseases and the need for vaccinations in the U.S.

Community immunity, also known as herd immunity, is a pivotal issue for people with primary immunodeficiency diseases (PI), and it was important that our community was represented at this hearing as IDF President & CEO John G. Boyle was invited to serve as one of five advisory board panelists.

Since You Asked: Question & Answer (February 2019)

This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.

Question 1: I have not traveled outside of the U.S. since I was diagnosed with Common Variable Immune Deficiency (CVID). I am planning a trip abroad and need to know what precautions I should take prior to traveling? Should I get the suggested vaccinations? Will they even help me? Can I take my subcutaneous infusion supplies with me?

SCID Compass – An Educational Program of the Immune Deficiency Foundation

SCID Compass, an educational program of the Immune Deficiency Foundation (IDF), seeks to improve outcomes for infants with Severe Combined Immunodeficiency (SCID) by enhancing access to and use of educational resources, providing linkages to critical services for patients and families, and developing protocols and mechanisms for long-term follow-up for infants identified with SCID through newborn screening.

Two New Webinars Offer Families Insight on Severe Combined Immunodeficiency

Severe Combined Immunodeficiency (SCID) is one of the most severe forms of primary immunodeficiency diseases (PI). Affected infants appear healthy at birth, but the diagnosis can be fatal without early detection. Screening all children born in the U.S. for SCID is now required in all 50 states, but many families may wonder what happens after diagnosis?


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