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The IDF NEMO Initiative was established as a project dedicated to help families and to address the acute need for a program for education, awareness, research and diagnosis of NEMO.

NEMO is a form of primary immunodeficiency, a complicated disease caused by a genetic mutation in the IKBKG gene that contains the code for a protein called the “NF-κB essential modulator”. NEMO can affect many different cells of the body, both within and outside of the immune system. Individuals with NEMO can have a variety of different problems which relate to the location of the mutation inside the gene. The most common clinical finding is susceptibility to specific bacterial and viral infections. These can be severe, unusual and life-threatening. A majority of patients have skin and dental problems and many are affected by autoimmunity. NEMO is a life-threatening illness, but superb options are presently available to patients who have received a timely diagnosis


The mission of the IDF NEMO Initiative is four-fold:

  • To expand public awareness of NEMO and the treatment options among families, physicians, and the general public.
  • To increase the probability of early detection and treatment, with the goal to have tools for diagnosis.
  • To fund research efforts that will identify new treatments, therapies, and ultimately a cure for NEMO.
  • To provide opportunities for affected individuals and families to attend educational events with physicians and other families.

Current Programs

  • NEMO Support Group
  • Scholarship opportunities for NEMO families to attend IDF National and Regional educational programs.
  • Andy & Sofia, a true story of a family seeking answers to their son's disease. A portion of the proceeds from the sale of this book will be donated to the IDF NEMO Initiative. To order your copy from Amazon, go to:, and for the Kindle version go to:

Click Here to download the newsletter article on Andy & Sofia

To contact IDF about any of the programs listed above, email

Donate Today

IDF has developed an oversight committee for the NEMO Initiative fund, comprised of community members with specialized interest and knowledge specific of NEMO.

To contribute to the IDF NEMO Initiative, you can donate now online, or mail your contribution to:

IDF NEMO Initiative
110 West Road
Suite 300
Towson, MD 21204