Sanne van Rijn | Patient advocate & psychologist
Vereniging HCHWA-d
Sanne van Rijn is a patient advocate, EUPATI fellow and psychologist with Vereniging D-CAA, bringing both lived-experience insight and professional expertise to rare-disease advocacy. She is committed to ensuring that the needs, priorities and voices of people living with rare conditions and their families are meaningfully represented across research, care and treatment development.
At World Orphan Drug Congress 2026, Sanne will contribute a patient-centred perspective on advocacy, collaboration and the importance of partnership between patient communities, healthcare professionals, researchers, industry and policymakers to improve access to innovative therapies for the rare disease community.
Appearances:
Pre-congress workshops @ 15:30
From EU Approval to Patient Availability: Rethinking the Path for Orphan Drugs in The Netherlands
A medicine may be approved in Europe and still remain out of reach for patients in the Netherlands. Why?
Three patient organisations will bring the access challenge to life through real-world cases before a multi-stakeholder panel addresses the questions that matter: Where does the system fail people living with rare diseases? Which barriers can we tackle together? And what must change now to secure treatment for today’s patients and those still waiting for a diagnosis?
This is an interactive session. Through Mentimeter and an open microphone, participants will challenge the panel, test practical solutions and help identify next steps towards faster, fairer and more sustainable access to orphan medicines for people living with rare diseases in the Netherlands.
Pre-congress workshops @ 17:30
A Rare Networking Opportunity - Offsite Networking Drinks
A Rare Networking Oppurtinty: Where Rare Meets Real
A Rare Networking Opportunity brings together rare disease patient advocates and professionals working towards rare disease therapies — not to pitch or present, but to genuinely connect. It's easy to reduce people to statistics. To translate lives into numbers. To lose sight of the humans behind the ideas and the data. But those of us living with rare disease know what lies beneath those numbers. And that story matters.
We bring humanity back into the conversation. We know the choices we make and why we make them. We know what we need. And we want to be heard. That's why we're turning the tables and inviting you in — to talk with us, to learn from us, and to reflect on what "rare" really means. Because co-creation achieves so much more than decisions built on assumptions.
The event makes room for the kinds of exchanges that conferences rarely allow. Advocates share what it truly means to live with a rare disease, while researchers, innovators, and policymakers share their goals and challenges in return. We invite you into down-to-earth conversations where new ideas and collaborations can emerge organically, rooted in reality and mutual curiosity.
The atmosphere is intentionally human. A relaxed setting, a carefully considered vibe, and the simple act of lighting up for rare — in green, blue, and purple — signal that this is a different kind of event.
The Rare Networking Opportunity is a showcase of what happens when rare connects. When people who care for rare — whether through lived experience, professional mission, or both — come together, something shifts. Awareness deepens, assumptions are challenged, and the humans behind the rare disease label get the spotlight they deserve.
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