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October 1-2, 2021

The Immune Deficiency Foundation's Rare of the Rare Summit aims to focus more attention on those who are sometimes overlooked, even among those who specialize in rare diseases. This multi-day virtual summit will include opportunities for engagement, including sessions, keynotes, and space to connect with sponsors, exhibitors, and subject matter experts. Rare of the Rare is designed for those with ultra-rare primary immunodeficiencies. 

The theme of this year’s event is Diving into Precision Medicine. Precision medicine is defined as "a medical model that proposes the customization of healthcare, with medical decisions, treatments,  practices, or products tailored to a subgroup of patients instead of a one-drug-fits-all model." Participants joining will have the opportunity to connect with others, hear from world-renowned experts in the field, and leave empowered to advocate for their own needs.   

The following diagnoses will be the focus of Rare of the Rare: 

  • Chronic Granulomatous Disease (CGD) 
  • Complete DiGeorge Anomaly (CDGA)/Congenital Athymia 
  • Good’s Syndrome (GS) 
  • Hemophagocytic Lymphohistiocytosis (HLH) 
  • Hyper IgE Syndrome/JOB Syndrome 
  • Hyper IgM Syndrome (HIGM) 
  • Natural Killer (NK) Cell Deficiency 
  • NEMO Deficiency Syndrome 
  • Primary immune regulatory disorders (Activated PI3K delta syndrome (APDS), FOXP3, IPEX, CTAL4, LRBA, STAT1, STAT3 (GOF) and unspecified primary immunodeficiencies 
  • Severe Combined Immunodeficiency (SCID) 
  • WHIM (warts, hypogammaglobulinemia, infections, and myelokathexis) Syndrome 
  • Wiskott-Aldrich Syndrome (WAS) 

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