Family carers

Families struggling with immunodeficiency often do not know where to turn for help. Social, emotional, and financial burdens can often be overwhelming. This following resources are aimed at helping families cope with PI to enable their loved ones to enjoy a better quality of life.

As well as the downloadable links below, here are a few useful links from our NMOs.

 

  • Patient & Family Handbook for Primary Immunodeficiency Diseases 4th Edition - This handbook contains comprehensive information about the diagnosis and treatment of primary immunodeficiency diseases and much more.
  • Our Immune System - This storybook educates children about primary immunodeficiency diseases through delightful, eye-catching illustrations. The characters explain how the immune system works and describe the treatments for pediatric patients. It is also available in Spanish.
  • Is It Just An Infection Awareness Flyer - Perfect for bulletin boards in physicians’ offices, schools or other public places that will catch the attention of people in the community, this flyer cautions people to be suspicious if they have an infection that is recurrent, persistent, severe, unusual, or if it runs in their family. 
  • THINK ZEBRA! is the awareness program of IDF, the national patient organization in the U.S. for those living with primary immunodeficiency diseases. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras”, and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with primary immunodeficiency diseases are the zebras of the medical world.
  • IDF 2013 National Conference – June 27-29, 2013The IDF National Conference, which will be held June 27-29, 2013 in Baltimore, MD, is the only meeting in the U.S. that brings together the primary immunodeficiency community for three days of learning, discussing and sharing. It is an incredible opportunity for individuals and family members living with primary immunodeficiency diseases to gain knowledge about their diseases from world-renowned immunologists. Attendees will learn about advancements in the diagnosis and treatments and gain skills needed to manage their healthcare. Patients and families will have the opportunity to meet other families and talk with our generous sponsors in the interactive exhibit hall. To learn more, visit http://idfnationalconference.org/
Family Carers Toolkit
Family Carers Toolkit

The Family Carers tool kit is a resource for families to help educate school staff and their broader communities about PI as well as their child’s particular primary immunodeficiency disease and needs.