"Small" diseases, those occurring to a very small percentage of the population, are often ignored by the research funding agencies. But sometimes people overcome this problem by creating their own advocacy organizations to raise funds and sponsor research outside of the normal grant-making process--and also create a community of interest among patients, health care providers, and researchers. Social media makes this more possible than ever.
Such is the case with Adenoid Cystic Carcinoma (ACC), a rare cancer of secretory glands, typically originating in the head and neck region. ACC is diagnosed in only about 1200 cases per year and afflicts about 10,000 people in the US. The disease often afflicts young and middle-aged patients. The median age at diagnosis for ACC patients is a decade younger than for all cancer patients. ACC’s progression is typically gradual and sometimes relentless. The disease has a tendency to grow along nerves and metastasize to the lungs.
My friend Marnie Kaufman was 38 years old, with four sons under the age of 10, when she received her diagnosis of ACC. Frustrated at the lack of ongoing ACC research, she and her husband, Jeff, formed the Adenoid Cystic Carcinoma Research Foundation in 2005. This has been a well run and thoughtful organization, and they now note the establishment of a new website The website serves a pivotal role as a clearinghouse of high quality information for both patients and researchers. For patients, we have reorganized the navigation to make it simple to find information related to each stage of disease or a particular treatment. For researchers, we have presented a centralized inventory of research resources. And for the entire ACC community, we have summarized past and ongoing ACC research projects.