How to build relationships and network

Welcome to this guide on building relationships and effective networking for rare disease patient groups!

Networking isn’t just a helpful tool — it’s a lifeline for rare disease leaders.

In a space where patient communities are small, geographically scattered, and often under-recognised, strong networks are the bridges that connect isolated efforts to collective impact.

In the rare disease world, collaboration isn’t a luxury — it’s a necessity.

Working together amplifies voices, unlocks innovation, and brings visibility to conditions that too often go unnoticed.

Through meaningful connections, patient group leaders gain access to the following critical resources that can empower advocacy and change:

Research partnerships

Medical expertise

Funding

Shared knowledge

But let’s be honest…

Networking can feel intimidating!

Walking into unfamiliar rooms, introducing your story to people who may have never heard of your condition, and finding common ground with stakeholders across the healthcare landscape — it’s a lot to navigate.

That’s why this guide is here to help!

Whether you’re just starting out or looking to strengthen existing partnerships, we’ll walk you through practical strategies to connect with confidence, build lasting relationships, and grow your community’s reach and impact.

Because when rare leaders come together, powerful things happen.

With thanks to:

Tarquin Bennett-Coles, Director of Talent at CellCentric and Director of Life Sciences at Compass Carter Osborne, who provided pro-bono support in the creation of this top tip video guide.

Tarquin is Director of Talent at CellCentric and Director of Life Sciences at Compass Carter Osborne. He has over 25 years of international executive search, talent scouting and leadership identification experience.

Tarquin’s focus is on senior leadership roles in the life science space. He has been involved in many high-profile hires, including the CEO for the global vaccine NGO the Coalition for Epidemic Preparedness Innovations (CEPI).

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Prior to joining Compass Carter Osborne, Tarquin held senior roles in life science boutique search firms. His career has also included time as a Global Talent Scout at AstraZeneca.

Tarquin is a trained STEM advocate and an advisor for Gynii Me and a pro-bono mentor and careers advisor for the Homerton Changemakers and the Cambridge Judge Business School.

With thanks to the Funders of The Empowerment Programme 2025

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