Mission: The Histiocytosis Association of America is an international partnership of parents, patients, physicians and friends bound together by their interest and attachment to histiocytic disorders. In an effort to compensate for the shortage of information on the disorders and the small number of individuals and families dealing with them the Association provides a variety of educational and emotional support programs to its members, as well as other interested parties. In addition, the Association promotes scientific and medical investigation into histiocytic disorders through its research program with the aim of establishing better treatments, a cure, and prevention of the diseases.
Programs: Education and outreach: the histiocytosis association provides educational information and opportunities to patients and their families as well as to the medical community through our online presence at www. Histio. Org, educational videos, printed materials and ecommunications. We provide emotional support with our circle of friends program, social media activity, telephone-based helpline and histio warriors directory which connects patients and families in a private and secure setting. Through our physician directory, patients and doctors alike can find experienced physicians in their area. We advocate for patients with histiocytic disorders throughout the year, particularly during september histiocytosis awareness month, to raise funds and awareness about these rare disorders.
research initiatives: we fund the very best basic science research being conducted worldwide as identified through a competitive evaluation process; the results of this funding continue to pave the path to a cure. We fund clinical studies that result in identifying the best possible treatments for histiocytic disorders; this provides immediate aid to patients battling these diseases. And we directly facilitate research by managing the histiocyte society, the only professional medical organization specifically dedicated to the research and treatment of histiocytic disorders; this unique relationship provides us with unparalleled access to the latest advancements and information in the scientific community, from which all patients can benefit.
As an LCH survivor and long time supporter, the Histiocytosis Association has been an incredible resource for me and my family over the years. They provide an amazing level of support and knowledge to help further the general understanding of histiocytic disorders as a whole. Their entire team is passionate and engaging and works tirelessly to help further the cause of finding a cure for these terrible diseases. Keep up the terrific work you do!
I've had the pleasure of working with this amazing organization for the past several years. What is most impressive about Histiocytosis Association is first of all their amazing presence in the community and their ability to provide a vital service to those in need. But also the exemplary individuals that work at this organization. Founder Jeffrey Toughill, Executive Director Deanna Fournier, Kristen Nesensohn, and Danielle Hellick along with the rest of the team are second to none. This is an organization that truly makes me smile!