Exploring the personal experience of a rare Castleman's disease diagnosis and the challenges in finding updated information and effective treatments for rare diseases.
After treating his own rare disease, Chasing My Cure author David Fajgenbaum explains how existing drugs can help other sufferers survive the unknown.
What We Discuss with David Fajgenbaum:
Dr. David Fajgenbaum nearly died multiple times from a rare ailment called Castleman disease, for which there was no effective treatment available.
The current healthcare system does not incentivize pharmaceutical companies to find new uses for existing drugs, especially for rare diseases, leaving many potential treatments undiscovered.
Driven by his own experiences, Dr. Fajgenbaum realized that many existing FDA-approved drugs could be used to fight rare diseases for which they weren't originally intended.
Dr. Fajgenbaum founded Every Cure, a nonprofit organization that uses AI to match existing drugs with rare diseases they could potentially treat, greatly accelerating the process of finding cures.
You can make a positive impact by supporting organizations like Every Cure, which are working tirelessly to find treatments for rare diseases using innovative approaches. Consider donating to their cause, spreading awareness about their mission, or even sharing your own experiences with off-label drug use that has helped you or someone you know. Every contribution, no matter how small, can help bring hope and relief to those suffering from rare diseases.