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Be a Leader in the Rare Disease Community

POSTPONED - CURRENTLY RESCHEDULED FOR AUGUST 28-30, 2020
June 19-21, 2020

Bethesda Marriott
5151 Pooks Hill Road | Bethesda, MD 20814

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. This is an opportunity for those affected by these "rare of the rare" diagnoses to meet with NIH experts, learn about new research and therapies, and meet others who share similar experiences. Your feedback about unmet needs in these communities will help guide future programming from IDF.

Featured sessions will include clinical trial information, family-centered programming, a focus on YOU as the expert, targeted breakouts, and information on the state of treatment and therapy.

The summit is designed for those with phagocytic and complement disorders as well as t-cell and combined deficiencies including:

  • 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)
The Application Process

Due to the COVID-19 pandemic, the event has been postponed and is currently scheduled for August 28-30, 2020. The application deadline has been extended to May 15, and we will notify selected applicants on May 22 so that they can complete the registration process.

Use the links below to apply.

Frequently Asked Questions

Is this open to families or individuals?
This is a family-centered event and applicants can be patients or parents. On-site childcare will be available as part of the summit. Please note, due to budget constraints, there is only one room available for each family.

What is Rare of the Rare and how is it different than IDF Conferences or educational meetings?
This event is a first for IDF. We recognize that one size does not fit all – especially for those with extremely rare diagnoses.

What is the cost?
There is no charge to attend. If selected to participate, IDF will provide two nights hotel (one room per family), travel* to and from the summit, and registration for Rare of the Rare.

*Stipends are for conference attendees only with a maximum allocation of $500 per individual, or $750 per family. 

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