How to run events: tips and tricks for rare disease patient groups

Planning and running an event can feel overwhelming, especially if you have limited resources or experience. But don’t worry—you’re not alone! This high-level overview is designed to be your personal toolkit, walking you through every step of organising successful events for rare disease patient groups. Whether you’re hosting a small coffee morning or a large conference, we’ll cover everything from planning and logistics to promotion and post-event follow-ups.

This high-level overview with general tips is divided into easy-to-follow sections, including:

Top tips

We’ll walk you through each part of event planning, from initial ideas to post-event follow-ups.

Checklists and templates

These will keep you organised and ensure nothing falls through the cracks.

Examples of patient group events

Learn from real-world examples to see what works best.

Links to additional resources

We’ll provide helpful tools and links to make your event planning easier.

With thanks to:

Juliette Rothera, Marketing Director at GIG Health and rare disease advocate, who volunteered to create this course for rare disease patient groups in the Summer of 2025.

Hi, I’m Juliette! I’m passionate about amplifying patient voices and ensuring they’re at the heart of healthcare decision-making. My career in events, communications, and marketing spans international roles, from supporting rare disease advocacy initiatives at EURORDIS-Rare Diseases Europe and the Alpha-1 Europe Alliance, to volunteering at Great Ormond Street Hospital, and leading marketing and communications at the New York–based patient advocacy consulting firm VOZ Advisors.

View full bio

In my current role at GIG Health, I oversee all marketing activities and contribute to business development, helping shape impactful patient education and awareness initiatives. I’ve intentionally built my career around the principle that no medicine should be developed without the voice of the patient. Outside of work, you’ll often find me hiking and recharging in nature.

With thanks to the Funders of The Empowerment Programme 2025

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Resource type

Course



Skill level

Beginner



Duration

Est. 90 minutes



Last updated

August 2025



Resource type

Course



Skill level

Beginner



Duration

Est. 90 minutes



Last updated

August 2025

What will you learn in this course?

Outline what to consider when organising different types of events commonly hosted by patient groups

Ensure patient groups can maximise their impact while managing time and resources efficiently

Break down each step of the event planning process—before, during, and after

Provide practical tools, templates, and real-life examples

Highlight different types of events that patient groups can run

Who is this course for?

This toolkit is perfect for:

Rare disease patient groups, caregivers and volunteers

If you’re leading a rare disease patient group and want to:

Engage and support your community more effectively
Raise awareness or influence policymakers
Organise supportive and educational gatherings

Well-planned events can be game-changers and this toolkit is for you!

Medical professionals working with patient groups

If you work in healthcare and want to engage with patient communities, this overview with general tips will help you understand their needs and how to create impactful events.