Patient group structures: finding the right fit
Patient groups come in many shapes and sizes—from informal online communities to international charities.
But behind every structure is a shared purpose: to support, empower, and advocate for those affected by rare conditions.
In this course, you’ll learn about the different ways patient groups can be structured, depending on their goals, resources, and scope.
We’ll introduce how the way your patient group is set up can influence the organisation’s activities, tax, funding opportunities and impact, and ultimately the development of your organisation.
You’ll also gain practical insights into some of the benefits and limitations of each structure, along with real-life examples of groups that have chosen different paths.
At the end, we’ll walk you through some questions you can ask yourself when deciding which model fits your mission, vision, and resources!
With thanks to the Funders of The Empowerment Programme 2025
Resource type
Course
Skill level
Beginner
Duration
1-2 hours
Last updated
March 2025
Resource type
Course
Skill level
Beginner
Duration
1-2 hours
Last updated
March 2025
What will you learn in this course?
- The most common structures patient groups can take and key differences between them
- How each patient group type can affect your scope, funding, tax, governance, and reach
- Examples of successful patient groups using different structures
- What to consider when choosing or evolving your group’s structure
Who is this course for?
This course is designed for patients, caregivers, advocates, and community leaders who are planning to start a patient group or reassess the direction of an existing one.
It’s also useful for healthcare professionals, researchers, and funders who want to better understand how patient groups are organised and how to collaborate effectively with them.
Whether you’re looking to create a local support group, build a formal charity, or scale an existing initiative, this course offers a clear, practical introduction to choosing the structure that will best support your goals, resources and vision.
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