Finding answers is only the beginning of the journey. The organizations below offer disease-specific information, family support networks, educational resources, and opportunities to connect with others navigating life with an inborn error of immunity (IEI).
General IEI Resources
Immune Deficiency Foundation (IDF)
The leading U.S. patient advocacy organization for primary immunodeficiencies/IEIs. Offers educational materials, patient meetings, peer support, newborn screening information, treatment guides, and physician referral resources.
National Organization for Rare Disorders (NORD)
Provides disease information, patient advocacy, rare disease navigation resources, financial assistance programs, and links to patient organizations.
Rare Disease Day
Global awareness movement held each year on the last day of February to advocate for the more than 300 million people worldwide living with rare diseases and to promote earlier diagnosis, research, and access to care.
Clinical Immunology Society (CIS)
Provides patient education materials and resources to help families understand immune disorders and locate clinical immunologists
Children’s Oncology Group (COG)
Provides information about childhood cancers, blood disorders, clinical trials, survivorship, and collaborative research efforts relevant to many children undergoing evaluation for immune dysregulation, bone marrow failure, and hereditary cancer predisposition syndromes.
Research and Clinical Trial Resources
Primary Immune Deficiency Treatment Consortium (PIDTC)
A Rare Diseases Clinical Research Network consortium focused on severe and life-threatening IEIs. Provides information about clinical studies, newborn screening, transplantation, and gene therapy.
North American Pediatric Aplastic Anemia Consortium (NAPAAC)
Collaborative research network focused on aplastic anemia, inherited bone marrow failure syndromes, and related hematologic disorders in children.
North American Consortium for Histiocytosis (NACHO)
Multi-institutional consortium supporting research in histiocytic disorders and immune dysregulation syndromes.
ClinicalTrials.gov
Searchable registry of ongoing clinical trials and natural history studies.
Disease-Specific Advocacy
Familial HLH/Hyperinflammation Disorders
Chronic Granulomatous Disease (CGD)
Severe Combined Immunodeficiency (SCID)
Wiskott-Aldrich Syndrome
ALPS (Autoimmune Lymphoproliferative Syndrome)
Fanconi Anemia
Shwachman-Diamond Syndrome
Shwachman-Diamond Syndrome Foundation
RUNX1 Familial Platelet Disorder
Diamond Blackfan Anemia
Diamond Blackfan Anemia Foundation
Dyskeratosis Congenita & Telomere Biology Disorders
Severe Congenital Neutropenia
SCNIR (Severe Chronic Neutropenia International Registry)