Dr. David Fajgenbaum was read his last rites- but he did not die, instead he turned the rare disease research model around.

He is now working to expand the model he developed for Castleman Disease, to accelerate cures for many rare diseases.

The traditional model – Moms, Dad, Grandma and Grandpa hold bake sales and races. They develop crowd funding platforms. They encourage researchers to apply for research grants. The researchers apply for grants based on their interest, ability, the lab equipment they have, and the probability that they can get a published paper out of it. The families wait and wait and wonder if their disease will be figured out in their loved ones lifetime.

What’s wrong with this model?

• No communication between researchers
• No consensus on diagnostic criteria
• No consistent terminology
• Inconsistent coding and reporting
• May not be a logical disease model
• No patient database so patients, doctors and researchers can see what has been tried and the results

What is a better way? Build a community first!

Find all the researchers all over the world who have contributed to a disease’s research.

• Hold a meeting, bring them together, discuss what is known and what is not known and prioritize research that needs to be done.
• Find the best researcher for each specific priority. Who is best for testing a specific hypothesis?
• Establish a discussion board so researchers can collaborate
• Develop a patient registry with a physician and a patient portal, so doctors and patients and researchers can see what has been tried, what has worked and in whom. How can one get to personalized medicine without this?

When you have this together the academic, and pharma communities and NIH will help provide the funding and the facilities to do the research. Take a look at this website or the Castleman Disease Collaborative Network. It “is a global initiative dedicated to accelerating research and treatment for Castleman disease (CD) to improve survival for all patients with CD. We work to achieve this by facilitating collaboration among the global research community, mobilizing resources, strategically investing in high-impact research, and supporting patients and their loved ones”

Want to learn more ?  Watch this the video below