A RARE Networking Opportunity
Rare Disease Day | 26 February | 16:00 – 20:00 | Leiden Bio Science Park
Rare Disease Day is about awareness.
But awareness only matters when the right people are in the room.
On 26 February, A RARE Networking Opportunity brings together patient representatives, researchers, policymakers, and leaders from biotech and pharma for an evening focused on dialogue, responsibility, and shared understanding across the rare disease ecosystem.
Why join?
This is an intentionally curated networking event.
No pitches. No panels built for optics. No corporate showcases.
Instead, the evening is designed to create space for meaningful conversation between those living with rare diseases and those shaping research, policy, and development decisions.
Rare diseases sit at the intersection of science, policy, and lived experience. Progress depends on collaboration, yet these perspectives rarely meet on equal footing.
This evening creates that intersection.
Last year
You will:
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Engage directly with patient representatives and advocacy leaders
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Exchange perspectives with peers across industry, research, and policy
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Take part in a Rare Disease Day initiative that values substance over visibility
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Be part of a community-first event designed around listening and interaction
Program
16:00 – 17:45 | Arrival & reception
Registration, informal welcome, networking
17:45 – 18:00 | Welcome & opening
Opening remarks and context of Rare Disease Day
18:00 – 18:30 | Programme: Perspectives on equity
Short contributions from patients, policy, care, research, and public–private collaboration
18:30 – 18:40 | Light Up for Rare
Symbolic lighting moment and reflection on visibility and impact
18:40 – 19:45 | Networking reception
Informal networking with drinks and food
19:45 – 20:00 | Closing
Thanks and short outlook towards Rare Disease Day
Our partners
Who is this event for?
The format is deliberately small-scale, capped at approximately 200 participants*, to preserve quality of interaction. Accessibility is integrated from the start, reflecting the realities of the rare disease community.
Industry supports the event to enable independence, accessibility, and an open format without turning the evening into a promotional platform.
*All registrations are subject to validation so feel free to fill out the form.
Patient representatives and advocacy professionals
Event details
Date: 26 February | 16:00 – 20:00
Location: Emmy Noetherweg 2, Leiden, Netherlands
If you believe Rare Disease Day should be more than symbolic, join the conversation.