How do you define a rare cancer?
This is one the most commonly asked questions we receive- and the answer isn’t a simple one. While the default factor cited usually involves the number of patients affected by the disease, that can vary dramatically, from as few as a handful of people a year to as many as 20,000. As a result, the most definitive criteria are often determined by the treatment and research landscape:
- Does a research community exist for the cancer?
- Is research being published in notable publications?
- Are research models publicly available, including cell lines and/or mouse models?
- Most importantly, are there effective treatments available?
In rare cancers, the answer to all of these questions is often “no”. Fortunately, this also presents an opportunity. While rare cancers are distinct in many ways, they consistently face many of the same issues. Because of this, at TargetCancer Foundation we’re interested in ways that we can address these issues not just for one cancer, but for rare cancers more generally.
One of the most effective ways that we can do this is by collaborating with other rare cancer foundations. By joining forces and leveraging respective existing resources, we can work together to accelerate the research process.
This idea has led to an innovative new collaboration between TargetCancer Foundation and Angiosarcoma Awareness, Inc. (AA). Over the course of our year-long collaboration, TargetCancer Foundation will be helping AA to build their organizational infrastructure, and also provide support around new fundraising and patient support events. Simultaneously, TCF will be learning first-hand from a foundation that has developed a close knit and engaged patient community, as well as an innovative research initiative that directly empowers that community. We’re truly proud to be working with such a forward thinking and accomplished organization, and are excited to create a new precedent for rare cancer foundation collaboration.
A bit about our new partner:
Angiosarcoma Awareness is a not-for-profit foundation dedicated to funding research into angiosarcoma, a rare and aggressive cancer of connective tissue that affects just 300 patients in the United States each year. Patients diagnosed with angiosarcoma face a difficult prognosis compounded by a lack of effective treatments and a dearth of available clinical trials. Angiosarcoma patients do have two excellent resources at their disposal, however: an incredibly tightknit patient/caregiver community, and a nationally-renowned and respected leader in AA co-founder Dr. Corrie Painter. It is Dr. Painter’s vision and efforts that are now providing community members with a means to personally participate in, and contribute to, improving the research landscape for their disease.
Enter the Broad Institute of MIT and Harvard, and one of the most innovative existing research projects in rare cancers. The Angiosarcoma Project, led by a Broad team including Dr. Painter, is a paradigm-shifting initiative that allows patients to directly participate in research data generation by providing saliva, blood, and tissue samples. The samples are sent directly to the Broad’s world-leading laboratories for characterization and analysis, and the resulting data will be placed into public databases for the benefit of the entire research community. This incredibly powerful project stands to accomplish in months what otherwise could take decades in a cancer with such a small patient population. AA is playing a central role in rallying patients to participate, to advocate, and to inform this project so that it can be used as a model for other rare cancers. TargetCancer Foundation also serves as an advocacy partner on this innovative project.
We are thrilled to begin this collaboration with AA as we work towards our shared goals to support groundbreaking research, support and empower patients, and provide hope for those afflicted with rare cancers.