As the biotech industry flourishes and therapies become more targeted and personalized, the need for drug developers to interact with patients is increasing as well. While patient organizations took a backseat in the past, they are continuously gaining importance in drug development today. Nowadays, talking with patient organizations has become paramount for successful drug development, especially in the rare disease space. 

When his newborn son was diagnosed with cystic fibrosis in 2012, Daniel de Boer, then an IT entrepreneur, decided to switch careers completely. He co-founded and became CEO of ProQR, a Dutch company that develops drugs for rare diseases. Working with patients and their carers has been a priority for him ever since. 

“Patients have always been the core of [our] mission,” said de Boer. “We’ve always, from the beginning, established deep relationships with the patient communities and their patient organization representatives.”

The importance of the patient voice

The key point that everyone seems to agree on is the importance of the patient voice.  Understanding what patients and their carers need versus what biotechs think they need is crucial.

“These days, patient organizations are affecting drug development in ways they never have before or that weren’t standard in the industry before,” explained Bruce Bloom,