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January 17, 2020
Advocacy, SCID, SCID Compass

Call to Action - Save the Nation’s Newborn Screening Advisory Committee

POSTED BY: AFreestone

Every year, more than 12,000 infants are born with health conditions, such as severe combined immunodeficiency (SCID), that are not apparent at birth, but can cause serious health problems or even death if not treated early. And every year, these babies receive timely life-saving or life-altering care because of newborn screening. Newborn

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December 31, 2019

Urgent: Biologic Withdrawal Information for Gamunex (Two Lots)

POSTED BY: AFreestone

December 31, 2019 Grifols Therapeutics LLC has initiated a voluntary withdrawal of Gamunex. Click here to read the notification from the Patient Notification System. December 17, 2019 Grifols Therapeutics LLC has initiated a voluntary withdrawal of Gamunex. Click here to read the notification from the Patient Notification System.    

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December 16, 2019

Grifols launches XEMBIFY®

POSTED BY: mtewey

XEMBIFY®, Grifols’ first 20% subcutaneous immunoglobulin for Primary Immunodeficiency (PI) treatment, is now available in the U.S. Read the press release here.

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December 10, 2019
SCID

IDF Launches New Website Supporting Parents of Babies with SCID

POSTED BY: AFreestone

The Immune Deficiency Foundation (IDF) is excited to announce the launch of the new SCID Compass website which was designed to support parents of babies diagnosed with severe combined immunodeficiency (SCID), a rare genetic condition that is fatal if not treated within the first year of life.   The SCID Compass website, www.scidcompass.org,

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November 29, 2019
Research

Chronic Granulomatous Disease (CGD) Survey

POSTED BY: rdelaney

Your Input Creates a Better Understanding of CGD In September, IDF launched the first-ever Chronic Granulomatous Disease (CGD) Survey. Initially emailed to individuals and families affected by CGD, IDF has also recently started calling households to offer participants the opportunity to complete the survey over the telephone. By participating in

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