Fireside chat with Emily V. Gordon
August 17, 2023
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Bare lymphocyte syndrome type 1 and 2
Bare lymphocyte syndrome type 1 and 2 are forms of combined immune deficiencies (CIDs) characterized by a shortage of major histocompatibility complex (MHC) proteins.
Cartilage-hair hypoplasia
Cartilage-hair hypoplasia (CHH) is a skeletal dysplasia sometimes also referred to as immunodeficiency with short-limbed dwarfism. It is caused by mutations in the ribonuclease mitochondrial RNA-processing (RMRP) gene.
Cincinnati Children's
Cincinnati Children’s is the most experienced hospital in the nation in treating hemophagocytic lymphohistiocytosis (HLH). Their HLH team includes researchers and physicians who have studied the disease extensively. They care for between 10 and 20 children with HLH a year, a large number considering how rare HLH is.
Insure Kids Now
This site provides links to state child and adolescent health insurance programs.
Patient Advocate Foundation
The Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. They offer a co-pay relief program for individuals with all types of insurance.
2022 Annual Report
August 10, 2023
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Bone marrow transplant curative for man with DOCK8 deficiency
August 09, 2023
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Chapter 38: General Care
Download this chapter from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition.
Chapter 37: Clinical Trials
Download this chapter from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition.
