SCID Compass

From 11 am - 1pm (ET) today, IDF will host many of its industry partners in a unique expo-like event to help bring awareness to their patient voice.  

CLICK HERE>> TO JOIN TODAY'S EVENT

In an effort to seek new solutions, IDF is sponsoring a White Paper Challenge and invites submissions to address:

Mask Statement

The Immune Deficiency Foundation Strongly Urges Universal Masking in Schools

Dear Members of the IDF Community,

We hope you are weathering well, with all consideration for the challenges of our time. We welcome the start of a new season with cautious optimism and are reaching out with a quick update with positive news.

Long-time IDF constituent and volunteer Felicia Morton will moderate two CGD-specific sessions at the 2021 Rare of the Rare Summit set for Oct. 1-2.

In December of 2019, the World became familiar with a newly discovered Coronavirus- SARS-CoV-2. The disease this virus can cause in humans is known as COVID-19.

Recently published in the August 2021 Issue of Clinical Immunology is an article entitled "Expectations and experience: Parent and patient perspectives regarding treatment for Severe Combined Immunodeficiency (SCID)", co-authored by Heather Smith, Christopher Scalchunes, Morton J.Cowan, JenniferPuck, and JenniferHeimall. The survey was designed and distributed to families of individuals with SCID. Among the questions were SCID genotype and treatment, individual recollections of pre-treatment counseling, and present clinical status.

Of the 151 surveys analyzed:

On June 15, The Department of Homeland Security (DHS) and Customs and Border Patrol (CBP) closed the borders to Mexican citizens choosing to voluntarily donate blood plasma. These activities threaten to severely limit our community’s access to life-sustaining plasma-derived medications.

Diagnosed with chronic granulomatous disease, Paul Boorack urges those with PI to advocate for themselves and find providers they can trust.