Impacting the Histio Community
Helping the Histio Community through Research, Education and Outreach
Each year the Histiocytosis Association aims to help those within the histiocytosis community by providing much needed education while funding the path to a cure. In 2013 we accomplished this by:
- Funding nearly $250,000 in pioneering research to advance the knowledge of histiocytosis, lead to better treatments and, ultimately, find a cure.
- Investing in the “business of science” by acting as the administrative home for the world-renown professional medical organization the Histiocyte Society, bringing the medical and patient communities together (225 members from 33 countries).
- Promoting new and emerging treatments through sponsorship of clinical trials and studies.
- Sponsoring and organizing the Annual Meeting of the Histiocyte Society – the only scientific forum that focuses solely on histiocytosis – where more than 150 physicians and researchers gather to share knowledge.
- Conducting a rigorous scientific review process to identify and then fund only the best research being done around the world.
- Exceeding $5.3 million in total research funded through the Association grant program,enabling research projects that are resulting in fewer patient fatalities and more effective treatments.
- Enrolling nearly 300 physicians in the Histio Physician Directory that provides patients and families with access to experienced clinicians, which can result in better outcomes for patients.
- Providing a centralized and current source of information and resources to more than 138,000 unique visitors via the Association’s web-based community – www.histio.org.
- Distributing educational information to more than 800 newly diagnosed patients and families.
- Providing resources and information to more than 17,000 physicians, patients, families and friends since the organization began in 1986.
- Producing a 15-part series of expert-led educational videos to deliver vital information in multiple formats.
- Collaborating with numerous histiocytosis organizations around the world, including the Nikolas Symposium, to extend the reach of resources, education and research and to bring the world of histiocytosis closer together.
- Providing multiple communication avenues to patients and families, including social media outlets such as Facebook, Twitter and Pinterest, to keep them well-informed and engaged.
- Developing and maintaining the online home for the more than 200 international members of the Histiocyte Society, the only physicians group dedicated specifically to the research and treatment of histiocytic disorders.
- Launching a mobile version of the organization’s website to provide patients and families with quick and easy access to vital educational resources regardless of location; it was accessed more than 1,000 times during the first 7 weeks of operation.
- Facilitating 6 local Circle of Friends meetings in 5 different locations around the United States.
- Distributing 5,000 Rare Disease Day awareness cards to over 700 people from more than 40 rare disease organizations in 14 states and 2 countries.
- Leading the effort to raise awareness of histiocytic disorders during September’s Histiocytosis Awareness Month campaign.