Dr. Fajgenbaum studied the rare disease research field alongside Dr. Arthur Rubenstein at the University of Pennsylvania and found systemic issues within the larger biomedical research community that were also slowing progress for CD research. The traditional model, which generally involves research organizations raising funds and inviting individual researchers to apply to use the funding how those researchers determine, was not working – there had to be a better way. Drs. Fajgenbaum and Rubenstein identified the following problems within the traditional model:
- Research is not done as part of an overarching strategy
- Projects don’t necessarily build on other projects
- Competition for limited funding prevents collaboration
- Few communication tools exist for researchers to connect with one another
- Patients are often not included in discussions of research
To overcome these barriers, and the many other obstacles that exist in the Castleman disease field, we partnered with Greg Pacheco and the Castleman’s Awareness & Research Effort (CARE) to turn the process on its head. We facilitate collaboration among the global research community and strategically invest in high-impact research, choosing what to study and finding and funding the best researcher for the job.
Our progress has only been possible because groups of physicians, researchers, patients, and loved ones have all joined together.