A Rare Community

The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders while leading the search for a cure. It is the only organization of its kind, connecting the patient and medical communities to:

  • Grow and share knowledge of histiocytic disorders,

  • Provide critical emotional and educational support to patients and families, and

  • Identify and fund key research initiatives that will lead to a world free of histiocytic disorders.

Learn more about the Association!


Histiocytic Disorders

Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, and organs. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic, debilitating and life threatening.

The majority of histiocytosis disorders occur in children under age ten. The disease affects roughly 1 in 200,000 children born each year in the United States. It can also occur in adolescents and adults of all ages. Histiocytosis is so rare that there is little research into its cause and treatment and is often referred to as an "orphan disease", meaning it strikes too few people to guarantee significant government funding.

You can learn more about the histiocytic disorders by visiting the Association's website.