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 2016 we accomplished this by:
- Funding $300,000 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 (258 members from 38 countries).
- Promoting new and emerging treatments through sponsorship of clinical trials and studies.
- Providing ongoing funding for the LCH-IV international clinical study database in Vienna, Austria.
- Developing the Histiocytosis Association's Medical and Scientific Advisory Committee (MSAC).
- Sponsoring and organizing the Annual Meeting of the Histiocyte Society – the only scientific forum that focuses solely on histiocytosis – where more than 180 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 $6.3 million in total research funded through the Association grant program, enabling research projects that are resulting in fewer patient fatalities and more effective treatments.
- Maintaining current information on over 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 200,000 unique visitors via the Association’s web-based community – www.histio.org.
- Distributing educational information to more than 900 newly diagnosed patients and families.
- Providing resources and information to more than 18,000 physicians, patients, families and friends since the organization began in 1986.
- Distributing 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.
- Hosting three Patient/Family/Physician meetings: Philadelphia, PA, Minneapolis, MN and Little Rock, AR.
- Enhancing our relationship with the LAM Foundation, to collaborate on improving the care of patients with pulmonary Langerhans cell histiocytosis patients.
- Exhibiting at two medical conferences with a focus on sharing information and spreading the results of Association funded research within the medical and research communities: ASPHO (American Society of Pediatric Hematologists/Oncologists) and SIOP (The International Society of Pediatric Oncology).
- Maintaining 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.
- Hosting students on National Take Your Child to Work Day where 4 children helped raise awareness and almost $300 for Histiocytosis.
- Helping to arrange the 1st ever Histiocystosis Weekend Camp with 10 families in attendance.
- Participated in two local community events where Association staff hosted an awareness booth and distributed information about histiocytic disorders to an estimated 5000+ attendees.
- Leading the effort to raise awareness of histiocytic disorders during September’s Histiocytosis Awareness Month campaign, including:
- Providing a new online campaign option called BOOST BLUE which raised almost $6,000 in it's first year, and
- Offering new Keep Calm and Fight Histio shirts and awareness ribbon pins