Patient Expert · Speaker · Advocate
I have SMA.
I am not SMA.
Stefan Bos is a EUPATI-trained SMA patient expert bringing the real patient perspective into healthcare — from drug development and clinical trial design to person-centred care and accessibility. Turning lived experience into lasting change.
"People over protocols — because behind every data point is a person."
About Stefan
An SMA patient expert with a seat at the table
I was born in 1989 with Spinal Muscular Atrophy — a progressive neuromuscular disease. Growing up, I focused on what I could do rather than what I couldn't. That mindset never left me.
When a new treatment changed my life in 2021 — improving my breathing, swallowing, and speech — it also sparked a new chapter. I got involved in patient advocacy because I saw how much the patient voice was missing from the rooms where decisions get made.
Today I work with pharmaceutical companies, research institutions, and healthcare organisations across the globe as an independent SMA patient advocate and consultant — to make sure patients aren't just consulted, they're genuinely heard.
I'm a normal Dutch guy who happens to know a great deal about drug development, clinical trials, and what it actually feels like to live inside the healthcare system. As a neuromuscular disease patient expert based in the Netherlands, that combination is rare. And it's useful.
Credentials & Roles
EUPATI Fellow — European Patients' Academy on Therapeutic Innovation, certified 2024
Board Member— SMA Europe
Patient Representative — Spierziekten Nederland
Accessibility Working Group — Amsterdam Airport Schiphol
Patient Advisor — UMC Utrecht, RadboudUMC, Spierfonds, ICHOM and many more
What I offer
How I can help your organisation as a patient expert
Whether you need a speaker who connects with an audience, a patient expert who strengthens your research, or a reviewer who brings the human perspective — I'm here.
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Speaking & Keynotes
Engaging, honest presentations for pharma conferences, medical symposia, and company meetings. As an international SMA speaker, I cover drug development, patient-centred care, clinical trial design, and accessibility — combining personal story with practical insight.
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Advisory & Consultancy
SMA patient expert input for pharma and biotech companies, research institutes, and healthcare organisations across Europe. Services include trial design, patient engagement strategy, outcome measure selection, and advisory board participation.
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Review & Co-creation
Patient review of clinical documents, informed consent forms, patient information materials, and research protocols from a neuromuscular disease perspective. Making sure your work is understandable and meaningful to the people it's actually for.
Speaking topics
Themes I speak on
Each speaking topic draws on real lived experience with SMA — grounded in patient expertise, delivered with warmth and a touch of humour.
When Hope Became Reality
The treatment approval journey through a patient's eyes — from trial design to reimbursement. What it means to live through a treatment breakthrough.
People Over Protocols
Why person-centred care matters — and what happens when it isn't. Based on real experiences navigating acute care with SMA, including the night a protocol nearly cost me my life.
Designing Trials for Real Lives
What patients actually need from clinical trials — relevant endpoints, inclusive design, and outcome measures that reflect life beyond the clinic.
Accessibility Beyond Compliance
What genuine accessibility looks and feels like — in healthcare, travel, and everyday life. From the Schiphol accessibility working group to personal experience on the road.
Organisations I have worked with
Get in touch
Let's work together
Interested in booking me to speak, or exploring how patient expertise can strengthen your project or organisation? I'd love to hear from you.
Full website coming soon — more stories, more resources, more ways to collaborate.