PA Rare Disease Leader Profile: Dr. David Fajgenbaum of the Castleman Disease Collaborative Network

This is the ninth in a series of profiles of the leaders of rare disease organizations based in Pennsylvania.

1. Full Name: David Fajgenbaum, MD, MBA, MSc

2. Current Hometown: Merion Station, PA

3. Organization’s Name: Castleman Disease Collaborative Network

4. Mission of the Organization: The Castleman Disease Collaborative Network (CDCN) 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.

5. Rare Disease(s) Covered by the Organization: Castleman disease

6. Your Role at the Organization: Co-Founder and President

7. How You Got Involved with the Organization: During medical school, I became critically ill with Castleman disease in 2010 and nearly died five times over a three year period. Between relapses, I co-founded the CDCN in 2012 to try to advance research and treatments to save my life and others. 

8. What You Are Most Proud of or What You Are Excited About Doing Next: Through the CDCN and laboratory work I was doing at Penn, I discovered that a treatment developed for another disease may be effective at treating me and other patients with my disease. I began taking this drug in 2014 and have been in remission for over eight years and many more Castleman disease patients are benefitting from it. I had the chance to share about this journey and lessons I learned in a book I wrote (Chasing My Cure: A Doctor’s Race to Turn Hope Into Action). I’m also proud that we’ve repeated this drug repurposing method to discover and/or advance nine other treatment approaches for Castleman disease and we’re now working to expand this approach to identifying and advancing drug repurposing opportunities across all diseases. 

9. What You Find Most Rewarding in Your Role: Seeing patients who have had their lives saved thanks to diagnostic criteria and treatment guidelines we developed as well as new treatment approaches we discovered is the most incredibly rewarding thing for me and my team. 

10. What You Find Most Challenging in Your Role: Collaboration and data sharing is a major challenge. There is a lot of reinventing the wheel which can be really frustrating.

11. Resources You Recommend to Other Rare Disease Advocates: I’d recommend a couple things. First, we’re leading an effort called ROADMAP to map out all the paths for drug repurposing that rare disease organizations can take. We’re currently in the data analysis stage but expect to have findings synthesized by the end of 2022 and other advocates should be able to use these insights to advance treatment identification for their diseases. 

    Second, I’ve learned so much from my journey searching for a treatment for myself and patients with my disease. I have shared all of these lessons, challenges, and action steps in a book I wrote about my journey called Chasing My Cure: A Doctor’s Race to Turn Hope Into Action.  

12. Any Advice You’d Like to Share with the Rare Disease Community in PA: Searching for treatments for rare diseases is really hard and sometimes it can feel like there’s no hope, but the path has been trekked and technologies are available that give us hope. But we can’t just hope and wait. We have to turn our hope for treatments into action. 

13. Links to Organization’s Social Media Accounts

• Facebook
• Twitter
• Instagram