These Three Organizations Are Revolutionizing Rare Cancer Research

Rare cancers are a unique research area which necessitate specified attention. Cancer Commons, Pattern.org, and the Rare Cancer Research Foundation are three organizations dedicated to improving the lives of those with rare cancers.

Cancer Commons

Cancer Commons was founded by Dr. Marty Tenebaum after he was diagnosed with metastatic melanoma. He was given a wide array of recommendations from different doctors and was left unsure of where to turn or what to do. Marty is thankful that he received life-saving experimental treatment, and he wants to provide other patients with more definitive answers.

Marty created Cancer Commons to help patients receive individualized therapies and action plans for their metastatic cancers.

Metastatic cancers often can’t be cured. But specialized treatments can significantly slow the growth of the disease. Marty himself was diagnosed in 1998 and is still doing phenomenally well in 2022. But finding these life-extending treatments can be incredibly difficult because each person is so unique.

Needless to say, it can be very overwhelming for the patient as they try to navigate a vast amount of information.

Cancer Commons works one on one with patients and their loved ones to help develop the best action plan for them. The organization also leverages the information they’ve learned from helping past patients develop the perfect treatment plan for new patients. They make sure that for each patient, no stone is unturned.

Pattern

Pattern.org was created because the founders believed that cancer research has been broken. Since there aren’t strong relationships between scientists and patients, research cannot be conducted effectively. Scientists need tumor samples from rare cancers in order to do the critical research patients need. Unfortunately, they don’t have the samples they need.

Pattern.org aims to fix this issue by providing an easy way for patients to donate tumor samples and their medical data to advance rare cancer research. This is helpful for scientists but also empowering for patients because they get to be involved in the research for their condition.

Scientists use the data from patients to generate models. From these models, they can determine investigative treatments and ultimately, cures. This type of research is vital because each rare cancer is different. Having accurate models for each specific cancer is critical to developing treatments that will work for each one.

Rare Cancer Research Foundation

The Rare Cancer Research Foundation’s (RCRF) mission is to improve rare cancer research, advance new therapies, and ultimately find cures.

Together, rare cancer deaths in the US are the leading cause of cancer deaths overall. More people die from rare cancer each year than from car accidents. The RCRF wants to change that.

RCRF works by making strategic investments and collaborating with over 200 partners who can advance research. Rare cancer research is dominated by non-profits which means they often struggle for funds. Collaboration can help advance research by ensuring each company has the resources they need to function.

RCRF is all about infrastructure. The organization ensures that each rare cancer has its own research foundation. Many research costs are fixed and can therefore be spread across different research centers. RCRF leverages economies of scale to help organizations that are already established share the research burden of rare cancers.

They provide solutions for cell lines, tissue samples, genome sequencing, animal models, patient registries, and more. Everything is maintained in a virtual integrated platform so it can be easily accessed. The organization hopes to revolutionize rare cancer treatments, help foundations focus more heavily on their novel drug development, and ultimately bring new therapies to rare cancer patients faster.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email