2011 - 2012 Accomplishments
The Histiocytosis Association is proud of its many accomplishments as it works to provide emotional and educational support to patients, families and physicians, fund research for better treatments and a cure, while managing the day-to-day operations vital to the mission’s success.
Research and Science
- Funded more than $500,000 in research grant awards to investigators around the world for a grand total of nearly $5 million since 1992 to aid in the pursuit of a cure for histiocytic disorders.
- Developed and maintained a research review and evaluation process comparable to that of the National Institutes of Health.
- Proudly sponsored, organized and executed the only open international, scientific meeting of histiocytosis medical professionals – the Histiocyte Society Annual Meeting in London, UK (2012) and Vienna, Austria (2011).
- As done for more than 20 years, continued conducting the “business” of science for the world-renowned professional medical organization – the Histiocyte Society.
- Awarded the prestigious Nesbit Prize for the best clinical paper presented at the Annual Meetings of the Histiocyte Society.
- Formed collaborative partnerships with the Histiocytosis Association of Canada and The Histiocytosis Research Trust in England to facilitate and fund vital clinical research across the United States and around the world.
- Partnered with National Disease Research Interchange (NDRI) to create a method to collect tissue, store it and make it available to scientists working on important research.
Outreach, Education and Advocacy
- Provided vital educational resources and materials to nearly 2,000 patients and their families.
- Developed an online Histio Physician Directory to help patients and their loved ones connect with nearly 300 experienced doctors in the US and worldwide:
- Facilitated 12 Circle of Friends support group meetings around the United States.
- Advocated for the more than 7,000 histio patients and families at the United States Rare Disease Day activities in Washington DC for three consecutive years (2010 – 2012).
- Collaborated with NORD (the National Organization for Rare Disorders) to advocate and raise awareness of rare diseases worldwide.
- Provided multiple communication avenues to patients and families, utilizing social media outlets including Facebook, Twitter, and Pinterest, to keep them well-informed and engaged.
- Developed and maintained a Volunteer Program with more than 75 active volunteers in positions ranging from proofreader to state resource developer to fundraising event host.
- Collaborated with physicians and medical facilities in Kansas City, Cincinnati and Staten Island to host educational meetings to provide patients and families with access to and information from the most prominent histio-related physicians, as well as present the much-needed opportunity to network with other patients and families.
- Developed and maintained a new online home for the Histiocyte Society, the only physicians group dedicated specifically to the research and treatment of histiocytic disorders.
- Launched a new online home for the histio community and continued to increase the amount of educational information available with multiple Frequently Asked Question sections and detailed late effects information on LCH.
- Assisted more than 50 volunteer-hosts in organizing successful awareness and fundraising events around the United States.
- Participated in a rare disease patient advocacy meeting hosted by NORD.
- Received a top four-star rating from Charity Navigator, America’s largest and most-utilized independent evaluator of charities, for sound fiscal management and commitment to accountability and transparency.
- Earned the GuideStar Exchange Seal for commitment to transparency; GuideStar’s mission is to revolutionize philanthropy and nonprofit practice by providing information that advances transparency, enables users to make better decisions, and encourages charitable giving.