About the Association

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.

Our Mission

We are dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

The Road to a Cure

The Histiocytosis Association is among the world’s leading financial supporters of scientific research into histiocytic disorders. Each year, the Association conducts a comprehensive and rigorous grant review process and, with the guidance of experts, identifies the most important and promising research studies to receive funding. The Association is proud to have awarded 178 research grants to investigators around the world, totaling more than $6.8 million to aid in the pursuit of a cure. Through a formal funding agreement, the Association ensures that recipients of grant awards share research findings with the medical community by publishing their work in professional journals.

The Association continues its efforts to support scientific endeavors by promoting, attending and sponsoring medical education initiatives and meetings. The goal of these efforts is to make the medical community more aware of current information regarding the diagnosis, treatment and research of histiocytic disorders and to recruit new physicians to join the search for a cure.

The Association is especially proud of its partnership with the Histiocyte Society – an extraordinary group of more than 200 physicians and scientists from around the world. The Society is committed to advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship, and oversight of clinical research.

Community Outreach

While the search for more effective treatments, and ultimately a cure, continues, the Histiocytosis Association – now more than 7,000 supporters strong – is dedicated to supporting and empowering the patients and families who live with these diseases every day.

Programs and services include:

Funding the Association

Histiocytic disorders are considered “orphan diseases”.  An orphan disease is one that affects fewer than 1 in 200,000 individuals in the United States. Subsequently, these disorders do not receive a high priority for government-funded research. The Association relies on contributions from corporations, foundations, and individual donors to fund critical research, build awareness and conduct community outreach initiatives.

Join the Association in the pursuit of a cure for histiocytic disorders; make a donation today.


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