This nonprofit is building the ecosystem to cure epidermolysis bullosa

Epidermolysis bullosa, or EB, is one of those diseases that stops you in your tracks the moment you understand it. Skin so fragile that the gentlest touch can cause blisters and open wounds. No cure. And for most of its history, very little serious drug development attention.That's where today's guest comes in. Martin Steiner is Managing Director of DEBRA Research, a non-profit organization with a single-minded mission: to make EB curable. But DEBRA Research isn't a lab. It doesn't run clinical trials or make drugs. What it does is something arguably harder: it builds the ecosystem that makes drug development possible. Funding research, investing in biotech companies, building shared infrastructure, and connecting the right people at the right time.And the results are starting to show. They have a growing portfolio of investments, dedicated clinical trial infrastructure, and a seat at the table in deals that are moving the needle for patients who have waited long enough.·  01:46 Meet Martin Steiner·  03:32 What is DEBRA Research·  04:55 What it means to live with EB ·  07:43 DEBRA Research's role in the drug development ecosystem ·  12:03 Why DEBRA Research invests in infrastructure ·  20:26 Why DEBRA Research makes equity investments in biotech ·  24:50 The Replay and LEO Pharma deal: how it came together ·  30:33 Obstacles to enabling collaboration in rare disease ·  34:50 Gene therapy and read-through molecules as therapeutic approaches ·  37:36 Is the DEBRA Research model replicable for other rare diseases Interested in being a sponsor of an episode of our podcast? Discover how you can get involved here! Stay updated by subscribing to our newsletterTo dive deeper into the topic: Gene therapy for skin diseases: A field still finding its footingSix exosome therapy companies driving development in the fieldExtracellular vesicles: a growing pipeline still searching for validation