Rare Disease Clinical Trial Network

@rarediseasectn.bsky.social

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HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core.

Yellow luggage at an airport terminal
Front cover of the "European Journal of Public Health" (Volume 36, Number 4, August 2026), published by Oxford University Press in partnership with the European Public Health Association (EUPHA). The top section is solid blue with white text. Below, the main image features a dark map of Europe covered in a heat map style overlay, with glowing clusters of light transitioning from blue to green, yellow, and intense red, showing dense concentrations across central and western Europe.
An informational graphic with a purple-to-green gradient background. The top left features the "Rare Disease Clinical Trial Network" logo next to a prominent banner reading "RESEARCHER SPOTLIGHT". On the left is a square-shaped headshot of a woman with brown, wavy hair. To her right is her name and professional title. The bottom half contains a white text box with research details and a website link.
A photo of a woman smiling at the camera with a frame of colours and tags from ECRD
Profile graphic featuring Dr Kasia Whysall, Associate Prof at University of Galway, a researcher in rare disease. The graphic includes their photograph, affiliation, and key research areas including her work in V-ATPase disorders. This image is part of the Rare Disease Research Network Researcher Spotlight series highlighting researchers across Ireland.
A screenshot from the registration page, "Masterclass: Rare Diseases — From European partnership programmes to clinical practices, 10 June 2026, 17:30 - 19:30, CPD Accreditation with RCPI applied for"
A team of people facing the camera in front of a poster, three of them are holding posters to support the TSC initiative
A post from UCD saying "The UCD lake welcomed a new family this spring, and one of the ducklings stands out from the crowd. A pure yellow duckling - highly unusual and rare in the wild. 🦆🐥" with a photo of four ducks, one is yellow
A man in a black jacket stands next to a banner with rare disease colours on it.
A woman with dark hair looking at the camera, wearing a white shirt
A woman with dark hair standing at a podium, while wearing a yellow blazer
A man wearing a black suit and glasses, smiling at the camera
A flyer for the conference with QR code to register
A colourful award next to a white plaque
A group of people standing facing the camera with two blue and purple screens behind them
A stack of printed guides sitting on a blue background
Three printed guides laying on a blue background
A woman wearing graduation robes and glasses stands in front of a glass building
A slide with the quote, “The EURO-NMD Registry unite expert clinicians across Europe focusing on tackling the biggest challenges including the diagnosis, treatment and management of rare and complex neuromuscular diseases. The Registry offers a great opening to advance research, improve patient care and enhance healthcare systems for neuromuscular patients in Ireland.” Dr Stela Lefter, Irish EURO-NMD Lead
A screencap from the job advertisement webite
The ERKReg registry allows multiple specialised centres across Europe to collaborate in the study of rare kidney diseases. Through these research initiatives, we will be better able to look after patients so affected.
Two women smiling at the camera in a crowded room
A woman stands in front of a screen in a dark room
Two women standing in front of a pullup for the event
A woman smiling in front of the RDCTN banner
Two women standing in front of a banner for the event
A screenshot of a webpage, which reads: At UCD Conway Institute, we are passionate about the work that we do and the potential it has to positively impact on society. We believe that our research is more relevant when stakeholders are actively engaged in the process. Through engaging with patients and the public, our research can reflect their valuable perspectives and is more likely to have a greater impact. Through engaging with teachers and pupils, researchers can help to ignite a spark of curiosity and raise aspirations of STEM (science, technology, engineering and math) careers.
A photo of a lecture room
A photograph of a slide presented at the conference with an assortment of publications showing
People standing in front of big letters in a crowded room
SEED FUND 2025 Aimed at supporting emerging and early career researchers to build pilot data aimed at developing an intervention and/or preparing for a clinical trial. We are committed to keeping the patient voice at the heart of our work and encourage applicants to consider meaningful and valuable collaboration with Patient & Public partners in their proposed research. CALL IS OPEN Closing date: 24 Nov 2025
A slide with text saying "Rare Disease Clinical Trial Spotlight: There is a clinical trial at Beaumont Hospital for adults with primary membranous neuropathy (a type of kidney disease). The trial examines a medicine called Povetacicept Versus Calcineurin Inhibitor and is sponsored by Vertex. Huge kudos to the teams at Beaumont and RCSI for making this important research happen!
A quote on colourful background, saying "The Eurreb registry is a great opportunity for us to highlight the numbers and experiences of Irish patients with rare endocrine and bone disorders. The registry brings together academic partners, patients and clinicians to drive research" with logos and a photo of Prof Rachel Crowley in the bottom right corner.
Screenshot of the seed funding application page from the website
Programme for the event
A paper with the event title held in a room of attendees
A white woman standing in front of a poster.
A man holding medical equipment wearing a lab coat
Five people sitting around a table discussing
Two women standing in front of a poster
Four people gathered around a poster holding the book
A woman standing behind a podium, speaking at the conference
A woman standing in front of a poster at a conference
A photo of a Seattle tour book, white shoes and a water bottle on the ground
Photo of six team members in front of the department of health
Speakers at the event