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Understanding intellectual property (IP) in rare disease drug development

Rare disease patient groups play an essential role in advancing drug development by collaborating with researchers, pharmaceutical companies, and policymakers.

Their involvement helps shape research priorities, influence treatment accessibility, and drive innovation.

A key component of effective advocacy and collaboration in this space is a strong understanding of intellectual property (IP).

For patient groups, IP knowledge is not just a legal or technical matter—it is a powerful tool that enables groups to advocate for affordable treatments, influence drug development strategies, and protect the interests of their communities.

This is particularly critical in areas such as drug repurposing, where existing compounds are investigated for new uses in rare diseases.

In these cases, IP issues can present significant challenges, from restrictions on freedom to operate to limitations in sustainable business models.

By fostering a deeper understanding of IP, patient groups can enhance their ability to collaborate strategically with academic partners and industry stakeholders.

This guide is designed to empower rare disease patient groups with the IP knowledge needed to engage in meaningful, informed discussions and help ensure that drug development ultimately benefits those who need it most.

Enrol now to learn more!

With thanks to:

Frank Frayne, Medical Writer at Word Monster, who generously provided his expertise and pro-bono support to create this course for patient groups.

I laid the foundations for becoming a Medical Writer while at university, where I completed a BSc in Medical Pharmacology and an MSc in Cancer Biology & Therapeutics. During this time, I had the opportunity to dabble in research, collaborating with the Institute of Infection & Immunity at Cardiff University, and the European Cancer Stem Cell Research Institute.

View full bio

Through my academic career, I developed a knack for being able to create scientific content for a variety of audiences that was clear, concise and engaging. This proved to be a refreshing change from the world of academia and its bubble of complex and hard-to-access information. I believe that bridging the knowledge gap in healthcare is especially relevant, given the large amounts of misinformation we see today. Realising how much more accessible science could be, I stepped into the field of Med Comms in 2021. I’ve been learning so much since then, and I’m loving every moment. During my spare time you’ll find me either in South Wales or Cornwall, trying my very best to become the next Johan Cruyff or indulging in a nap.

With thanks to the Funders of The Empowerment Programme 2025

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Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

July 2025



Resource type

Course



Skill level

Intermediate



Duration

Est. 90 minutes



Last updated

July 2025

What will you learn in this course?

Understanding the main challenges of drug development in the rare disease landscape

Understand each key stakeholder’s involvement in the drug development process

The role of intellectual property in incentivising research and development of new medicines

Acknowledging the relationship of licensing and royalty agreements between different stakeholders

Understanding the different strategies used to protect intellectual property

How licensing agreements can be responsibly negotiated with patient groups in mind

Who is this course for?

Patient advocates aiming to better understand how to navigate intellectual property, enabling meaningful collaboration with key stakeholders in the drug development process