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April 16, 2021
SCID, SCID Compass

SCID Video Focuses on Post-Treatment

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A newly created SCID Compass video explores how a family copes with the days and months after a marrow transplant as they wait for their child’s body to accept the new donor cells. The video, entitled “Coping with Post-Treatment,” is the fourth in a series created by SCID Compass partner Genetic Alliance Expecting Health. The series is designed

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April 14, 2021

Urgent: Biologic Withdrawal Information for Hizentra®

POSTED BY: mtewey

CSL Behring instituted a voluntary recall of one lot of Hizentra®    

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April 13, 2021

Leadership Update: Q&A

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IDF EMAIL UPDATE   QUESTIONS AND ANSWERS Has there been a transition in IDF leadership? John Boyle stepped down from his role as CEO after nine years of dedicated service to IDF, including three years as CEO. John and the Boyle family have been an important cornerstone of the foundation’s legacy. He will remain a tireless advocate for the PI

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April 09, 2021
SCID, SCID Compass

Shape the Future of SCID Compass

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Would you like to have a significant impact on the direction of the SCID Compass program? We promise it’s quick and easy and will only take a few minutes of your time. The SCID Compass program recently launched its SCID Demographics and Programming Questionnaire. The survey contains about a dozen questions designed to find out what type of

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March 31, 2021
Fundraising

Donor Spotlight: Joy Johnson

POSTED BY: rdelaney

Joy Johnson is no stranger when it comes to primary immunodeficiencies (PI). Joy was first diagnosed with Common Variable Immunodeficiency (CVID) five years ago and was overwhelmed trying to figure out how she would cope with the disease for the rest of her life. In addition to her diagnosis, Joy’s nine-year-old daughter was diagnosed with a mild

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