Rare Disease
Clinical Trial Network

Uniting Expertise, Empowering Patients:
Transforming Ireland's Rare Disease Clinical Trial Landscape

Public & Patients

Click here if you’re a patient considering a clinical trial or click here if you’re interested in our public & patient involvement (PPI) activities

Clinicians & Researchers

Information for clinicians & researchers about rare disease clinical trials, training opportunities and support available

Industry

Information for industry on our supports for setting up trials in Ireland, and navigating regulatory & approval processes

“We can work together to bring a better landscape for the families and the people that we care about”

Lorraine McGlinchey, Ulster University, Speaker at the Rare Disease Clinical Trials Conference, 2024

Why join the Rare Disease Clinical Trial Network?

International Expertise

The network is a collaboration hub that links with international expertise and advocacy groups to exchange ideas, build capacity, foster partnerships and speed up innovation in rare disease research.

Patient Led

Our public and patient involvement (PPI) activities ensure that the patient voice is at the heart of everything we do. This leads to better quality research and outcomes that meet the needs of the rare disease community.

Greater Access to Clinical Trials

Our international collaborations, PPI activities and support for industry & researchers help to increase the quantity and quality of rare disease clinical trials in Ireland.

Network Highlights

Spotlight on our Activity

Congratulations Dr Carla Moran, Consultant Endocrinologist, recipient of the 2024 Seed Funding Award. The project will explore Cardiac Phenotype of Resistance to Thyroid Hormone beta, a rare condition (1-2 people per 40,000) which is usually inherited.

The Rare Disease Research Conference took place on 10th April 2025 in the O'Reilly Hall UCD. Thanks to all our speakers, moderators, poster presenters, sponsors, PPI and charity partners and our wonderful delegates for making it a success!

Congratulations Eva Woods, TCD, winner of the Best PPI poster at Rare Disease Research Conference 2025 for work on PPI in Huntington's Disease.

Congratulations Atia Batool, UCD on winning the award for Best Poster at the Rare Disease Research Conference 2025 for a study on Defining the role of ATP-citrate lyase (ACLY) in Pulmonary Fibrosis Immunometabolism.

RDCTN was delighted to have the opportunity to recognise the invaluable contribution of our wonderful PPI partners at the Rare Disease Research Conference 2025.

RDCTN co-lead Prof Rachel Crowley shared insights from the work of RDCTN and RDCat at the RCSI conference on the Use, Re-Use and Sharing of Health Data. This provided valuable context for the discussion on the development and implementation of health data regulation, infrastructure and systems in Europe and Ireland.