Business Builders

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

Conor Kearney Season 12 Episode 2

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0:00 | 59:40

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.