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Patient Advocacy

We are committed to ensuring patients are considered as a true partner in the clinical development pathway, working together with patient groups to gather insights and incorporate the patient and family voice, from design to delivery of all of our Clinical Trials and Early Access Programs.

Principles of positive patient engagement

Early, often and transparent patient engagement is a crucial part of clinical development. Considering the patient perspective and incorporating the insights from the patient community can improve feasibility, accelerate timelines to approval and reduce patient and family burden. We listen and learn to truly understand a patient’s condition, their unique, personal experience and specific needs before we begin.





In response to the patient community, we have created educational materials to support the understanding of the Clinical Trials and Early Access Programs. You can find more information and access these resources within our Press section.

  • What is an Early Access Program? 
  • Janssen Guide to Expanded Access
  • ‘Key Patient Focus Considerations to Operationalize a Successful EAP’
  • ‘Inviting Patients as Equal Partners in the Drug Development Process’
  • ‘The Rare Disease Podcast 4 Medics, Clinical Trials and Early Access Programs with Bionical Emas’

Related case studies

Operationalise an EAP for a rare neurodegenerative condition (ALS)


Guide the evolution of a pre-approval access policy for gene therapy (DMD)


Our Approach to Rare