The Rare Cancer Research Foundation exists to help researchers
cure all cancers.

 

The Rare Cancer Research Foundation is focused on building extremely high-impact projects that support researchers who want to work on curing all cancers, not just the high-prevalence ones.

Our current focus is on creating biological models of rare cancers that researchers can use to improve their understanding cancer and test their ideas for treatment. Once created, we place all models into the open domain so they are available to any researcher.

Why Focus on Models?

"Rare" cancers kill 320,000 Americans every year and have been under-researched due to a lack of the resources for cancer researchers. If you want to study a particular cancer indication, having samples that you can study and having the ability to test treatment ideas is critical. The easiest way to provide these samples to any interested researchers is to create a model of that cancer that can be replicated in a lab and shared openly.

For over 50% of of cancers, this basic infrastructure that researchers need to do their job hasn't been developed yet. Hundreds of cancer indications don't have a single model available to researchers — meaning anyone that wants to study that cancer has to get access to a lot more money to do their work and needs to take on a great amount of career risk. We surveyed rare cancer researchers in January 2017: respondents told us their biggest research impediments were access to high quality cancer models (number one) and funding for their research (number two). 

Our project, Pattern.org, focuses on building the models that researchers need, then we make them openly available to researchers. We work directly with patient communities to spread the word about the option of tissue donation during a surgical treatment or biopsy.

Once a patient decides to donate their tissue, we work directly with their surgical team to get their tissue sent to a top cancer lab where it can be turned into a cancer model. Our work doesn't change a patient's treatment plan, as the donated tissue was already being removed during their treatment. 

If you're a rare cancer patient interested in learning more — please visit www.pattern.org

 

The Need

RCRF’s works directly to advance efforts to develop new and better therapies to treat rare cancer patients. We focus on high-impact projects that make all of the existing research work in rare cancers cheaper, faster, or better. By making it easier to study rare cancers, we amplify the work of smart researchers and encourage a diverse audience of researchers to enter the field.

This work is critical, and the numbers are tragic. 320,000 Americans, and almost 4 Million globally, die each year due to rare cancers. While each of these diseases may be more "rare" to get, they have a mortality rate radically higher than common cancers.

If RCRF’s work results in better outcomes for even 1% of rare cancer patients, this would represent tens of thousands of patients per year living longer lives, achieving higher quality of life, or both.

The Plan

RCRF is working to ensure that each rare cancer has its own research building blocks. Managing research is expensive and time consuming, but many of those costs are fixed and can be spread across multiple cancers. We leverages economies of scale to enable existing foundations to share solutions and maintain the fundamental research building blocks needed for every rare cancer.

RCRF builds the research infrastructure that enables researchers to focus on novel, incremental innovation. The work we do is openly available to any cancer researchers. We openly partner with foundations and medical research organizations, helping them bring the scale and sophistication to effectively advance a research plan. 

Today, we are predominantly focused on building cancer models through our project, Pattern.org. As an organization, we're always working with researchers to discover other high-leverage projects that we can help with. By building the infrastructure those researchers need and by aggregating best-practices from both inside and outside the cancer research community (our team and advisors range from the former Provost of MD Anderson to leading tech entrepreneurs), we build solutions that achieve both high quality and low cost.

That's our recipe for life-saving innovation.