March 31, 2020
US – Updated Handbook and Rare of the Rare Summit
Immune Deficiency Foundation releases newly updated Patient and Family Handbook
The Immune Deficiency Foundation (IDF) has just released the 6th edition of its primary written resource: The Patient and Family Handbook for Primary Immunodeficiency Diseases with the aim of providing reliable information to individuals with PI, their families, and their healthcare providers. The first edition of the Handbook was published in 1987. Since then tens of thousands of copies have been distributed; it has been translated in part or in whole into at least 13 different languages.
The first edition was composed of nine chapters covering five types of PI. The newest edition has 46 chapters and includes expanded information on more than 350 types of PI and includes an overview of the immune system and how its defects lead to disease. In addition to chapters dedicated to individual PIs, there are additional chapters with general information relevant to the inheritance, laboratory diagnosis, general care, and specific medical treatments of PI as well as chapters on life management issues for individuals of different ages.
Since the previous edition was released, there have been many important breakthroughs and discoveries regarding PI. All of the existing chapters have been revised and updated with new information and many have been completely rewritten. The authors and editors have tried to condense the often highly technical information available into a form that is informative yet still understandable to a reader not trained in medicine or immunology.
It is important to recognize that a regular dialogue between the individual with PI, their family, and their healthcare provider team is essential to facilitate the highest quality care. This Handbook is not intended to be a substitute for those critical interactions, but it should be used as a tool for patients and their families. Each situation is unique and the management of illness and its treatment must be customized to meet their individual needs. The development of a partnership between the individual and family and the healthcare provider is critically important for success in the management of lifelong challenges like those presented by PI.
To download a copy or to request a book, visit www.primaryimmune.org .
Immune Deficiency Foundation hosts collaborative learning summit for those diagnosed with the rarest forms of PI
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 event, held on August 28-30, 2020 in the Washington, DC area, is an opportunity for those affected by these “rare of the rare” diagnoses to meet with experts, learn about new research and therapies, and meet others who share similar experiences. Feedback about unmet needs in these communities will help guide future programming from IDF.
Applications are currently 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, and Wiskott-Aldrich Syndrome (WAS).
Immune Deficiency Foundation Information Portal for COVID-19: https://www.primaryimmune.org/coronavirus