Learning Hub
Welcome to the PNH Global Alliance Learning Hub
Advocacy starts with understanding. Whether you are newly diagnosed, a long-time patient, a caregiver, or a member of a patient organisation, the ability to speak confidently about your condition, your treatment options, and the research shaping the future of care is one of the most valuable tools you can have.
Effective patient advocacy is not only about lived experience — although that experience is irreplaceable and at the heart of everything we do. It is also strengthened by knowledge: understanding how evidence is generated, how new medicines move from the laboratory to the pharmacy, and how to critically read the data behind a headline or a clinical trial result. Research into training programmes for patient representatives has found that even a relatively short course in evidence-based medicine fundamentals can meaningfully increase participants' confidence and their ability to apply these skills in real advocacy and counselling settings.
That is the spirit behind this Hub. We have built a free, self-guided learning path made up of five sessions, designed to be followed in order:
- Introduction to Patient Advocacy — an overview of the PNH Global Alliance and the foundations of what patient advocacy means and how it works.
- The Drug Development Process — a walk-through of how treatments move from research to real-world access.
- Introduction to Research — a starting point for patient advocates and patient organisations looking to engage with research more directly.
- Statistics for Advocacy — why numbers matter in advocacy, and how to approach and read scientific papers without needing a statistics degree.
- Evidence-Based Advocacy — how to ground your advocacy work in solid, credible evidence.
The Hub is completely free and available to anyone in our community, at any time. Because the sessions build on one another, we recommend following them in sequence, but you can always pause, revisit, and return at your own pace. Complete all five, and you'll receive a certificate recognising your commitment to learning and advocacy.
Knowledge shared is knowledge multiplied.