Through its Research Program the Association seeks to attain its vision of a world free of histiocytic disorders by funding a variety of scientific initiatives associated with these diseases. While the Research Program’s most vital component is the direct funding of both basic and clinical scientific research, the program includes many other important elements.

For more than twenty years, the Association has served as the “Secretariat” for the Histiocyte Society, an international group of physicians and scientists committed to improving the lives of patients with histiocytic disorders by conducting clinical and basic research into the causes and treatment options for, these diseases. The Association offered to assume this responsibility more than twenty years ago in order to alleviate the Society from the burden of administrative duties associated with running a volunteer organization; this allowed Society members to focus solely on research and treatment of histiocytic disorders. As the Secretariat, the Association is responsible for the every-day administrative functions of managing the Society, including:  

• Collecting membership dues,
• Distributing materials and publications, 
• Producing an annual newsletter and membership directory,
• Building, developing and maintaining the Society website, 
• Managing the organization’s financial accounts,
• Facilitating communication between members and the Society’s Executive Board, and 
• Organizing and managing their annual meetings.

The Association also supports 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. Whenever possible the Association directly participates in specific research projects and insures that scientific information learned through Association-funded research projects is published in prominent medical journals.

Through its involvement with Histiocyte Society Clinical Trials the Association has the opportunity for direct and indirect involvedment with ongoing research efforts. By distributing active clinical trial treatment protocols to physicians, the Association helps to facilitate improved patient care around the world.

For more than eight years, the Association office has served as the North American Study Center for the LCH-III Clinical Trial. In this role the Association provided a constant venue for data collection, patient entry and updates, and administrative oversight for the international study. Though the study is now closed for new patient enrollment, the Association continues to pursue follow-up data for patients who were registered on the study while it remained open. The Association also supported this effort by providing financial reimbursement to medical institutions that enrolled patients on the study. This practice, common to scientific/medical studies taking place both in the United States and worldwide, serves as a means of encouraging physician and institutional participation. The Association will also provide this support to institutions for registering patients on the LCH-IV Clinical Trial, which is slated to open in early 2011.

The Association continued its effort to support clinical trials in 2008 by granting funds to enable the creation of a state-of-the-art Clinical Trials Database System for the Histiocyte Society. This system will house all current and future Society studies, including a study focusing on endocrinology and late effects, and patient registries, such as the International Rare Histiocytic Disorders Registry that is currently being established and organized by the Society. The Association is helping to manage and administer the development of the International Rare Histiocytic Disorders Registry, an initiative that the Association has been advocating for years.