June 19-21, 2020
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.
Applications are now being accepted 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)
This event is free to attend for those selected for participation. Applications will be accepted online until March 9, 2020. Those who are selected will be notified on March 16. We will do our best to ensure that there is a balanced representation of diagnoses, locations, age, and patient/caregiver status among the attendees. Selection is contingent upon certification of medical diagnosis.
Apply today using the buttons below.
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.