The business of saving lives – Evelyn Kelly on how Orphan Drugs actually reach patients

Evelyn Kelly joins Business Builders for a powerful conversation about rare disease medicine, scaling a global consultancy, and what it really means to build a business with purpose. From starting at her kitchen table in 2017 with no formal plan, to growing Orphan Drug Consulting from €250,000 to €5 million in just four years, Evelyn shares how she built a specialist pharma consultancy that has helped over 70 companies launch medicines in more than 100 countries. But this isn’t just a growth story. Evelyn works in the world of orphan drugs — treatments for rare diseases, many of which affect children. With over 7,000 rare diseases globally and fewer than 10% having approved treatments, she explains the regulatory, commercial and supply chain realities behind getting life-saving medicines to patients. The conversation explores what most people never see: clinical trial constraints, reimbursement battles across Europe, US pricing pressure, post-Brexit complexity, and the volatility currently hitting the biotech investment market. Alongside the technical depth, Evelyn reflects on leadership — absorbing hard feedback, building processes that allow scale, being responsible for other people’s livelihoods, and why managing risk isn’t about fear, but about stability. This episode is a grounded, high-level look at the intersection of purpose and process — and what it takes to build a resilient business in one of the most complex industries in the world. 🎧 In this episode, you’ll learn: – What orphan drugs actually are — and why they matter – How rare disease medicines get from lab to patient – Why Europe is becoming less viable for pharma launches – The real commercial realities behind life-saving drugs – How to scale from €250k to €5m without losing control – Why process matters more than headcount – The leadership lessons from absorbing difficult feedback – How to manage risk without limiting growth – Why branding and integrity go hand in hand – What volatility in the US means for global pharma ⏱️ Timestamps 00:00 – “We got that medicine to a child” 01:07 – What orphan drugs actually are 07:01 – Cystic fibrosis and Ireland’s unique prevalence 18:12 – Starting at the kitchen table in 2017 20:20 – Scaling from €250k to €5m 21:38 – Why process is the key to growth 26:59 – The BBC story that made it real 31:16 – Integrity vs selling what clients ask for 34:36 – Learning leadership the hard way 38:39 – Leadership for Growth and putting a board in place 52:26 – Why pharma investment has slowed 55:07 – Rolling with the curveball 58:07 – Avoiding burnout as an entrepreneur 🎧 Listen now on Spotify, Apple Podcasts, or YouTube. 👇 Full episode link in the comments.

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The business of saving lives – Evelyn Kelly on how Orphan Drugs actually reach patients is an episode from Irish Business Builders by Conor Kearney.

This episode is 59:40 long.

This episode was published on Feb 23, 2026.

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