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Be a Leader in the Rare Disease Community

September 25-27, 2020

The virtual summit will include opportunities for engagement, including sessions, workshops, keynotes, and space to connect with sponsors, exhibitors, and subject matter experts. Moving our in-person summit to a fully online format presents us with the unique opportunity to spotlight the best of what the online modality affords – meaningful collaboration and the ability to reflect and connect with others - no matter the location. 

The Rare of the Rare Summit aims to focus more attention on those who are sometimes overlooked, even among those who specialize in rare diseases. The summit is designed for those with phagocytic and complement disorders as well as t-cell and combined deficiencies including:

  • Activated PI3K-Delta Syndrome (APDS)
  • Chronic Granulomatous Disease (CGD)
  • Complete DiGeorge Anomaly (CDGA)
  • Good’s Syndrome (GS)
  • Hemophagocytic Lymphohistiocytosis (HLH)
  • Hyper IgE Syndrome/JOB Syndrome
  • Hyper IgM Syndrome (HIGM)
  • Leukocyte Adhesion Deficiencies (LAD) 1 & 2
  • Natural Killer (NK) Cell Deficiency
  • NEMO Deficiency Syndrome
  • Severe Combined Immunodeficiency (SCID)
  • WHIM (warts, hypogammaglobulinemia, infections, and myelokathexis) Syndrome
  • Wiskott-Aldrich Syndrome (WAS)

There will be more information to come, but in the meantime, mark your calendars and contact us at with any questions.