What is a rare disease patient group?

Rare disease patient groups play a vital role in the rare disease ecosystem, acting as advocates, facilitators, and the driving force for advancements in care, research, and policy.

In this guide, you’ll learn what rare disease patient groups are and their importance, not only for patients and families, but also as key collaborators with multiple stakeholders, like healthcare professionals, academics, researchers, regulators, funders or policymakers.

You’ll learn about common challenges faced by patient groups and practical advice on how to start navigating them.

This course is designed for anyone seeking to learn more about the role and importance of rare disease patient groups in the wide rare disease ecosystem. It is particularly valuable for patients, patient group leaders and caregivers who are considering starting a patient group or seeking to understand how patient groups can drive change.

Similarly, this course is valuable for other professionals such as healthcare providers, researchers, academics, and policymakers who want to gain a better understanding of how they can collaborate with patient groups.