Lightnews — Scholar-powered news

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 6d

CALL OPEN

To support emerging and early career researchers in building pilot data aimed at developing an intervention and/or preparing for a clinical trial. We encourage applicants to include meaningful collaboration with PPI Partners in the proposal.

rarediseaseresearch....

Screenshot of the seed funding application page from the website

1 1

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 7d

RDCTN co-lead Prof Cormac McCarthy will be chairing a valuable session at the upcoming Centre for Respiratory Disease 16th International Meeting, 'State Of The Art', held at St Vincent's Univ Hospital on Friday, 10th October. Register your interest by emailing [email protected]

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 8d

Delighted to attend the National PPI Festival Launch today! Great to be here, celebrating partnership and sharing learnings. Events are happening all across Ireland this month as part of the PPI Festival, a fabulous time to learn together! @ppi-ignite-net.bsky.social

A paper with the event title held in a room of attendees

Reposted by Rare Disease Clinical Trial Network

Sally Ann Lynch @sorchainenil.bsky.social · 10d

ERN-ITHACA WEBINAR: GENETICS AND UNIQUE POPULATIONS: THE CASE OF THE FINNISH, ROMA & IRISH TRAVELLERS - ERN ITHACA share.google/OijWa9iC0eeO...
14th October webinar 🧪🧪🧪

ERN-ITHACA WEBINAR: GENETICS AND UNIQUE POPULATIONS: THE CASE OF THE FINNISH, ROMA & IRISH TRAVELLERS - ERN ITHACA

Europe is made up of many different populations both indigenous to Europe and those that migrated in over the centuries. Differing barriers in healthcare access means that rare and ultra rare disorder...

share.google

1 2

Reposted by Rare Disease Clinical Trial Network

Rare Diseases International (RDI) @rarediseasesint.bsky.social · 8d

📣 Save the Date | Webinar on Health Financing & Social Protection for Rare Diseases

How can countries strengthen health financing and social health protection to better serve PLWRD?

🗓 5 November
🕒 14:00–16:00 CET
💻 Online
👉 Register here: events.teams.microsoft.com/event/36bd06...

1 2

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 10d

@europeanrespsoc.bsky.social @ucdresearch.bsky.social @hrbireland.bsky.social @ilfa-ireland.bsky.social @irishthoracicsoc.bsky.social

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 10d

Our own Sarah Forde presenting her work supporting research on Idiopathic Pulmonary Fibrosis (IPF), a rare lung disease, at #ERSCongress. A brilliant event to highlight ongoing research, innovation and discovery in improving lung health. Great representation of Irish RD research!

A white woman standing in front of a poster.

1 2

Reposted by Rare Disease Clinical Trial Network

RCSI University of Medicine and Health Sciences @rcsi.bsky.social · 10d

The @ppi-ignite-net.bsky.social National PPI Festival 2025 runs this October and will kick off with a free, two-day event at RCSI.

The festival showcases how patients and the public can be involved in planning, conducting and sharing research.

Learn more 🔗 www.rcsi.com/dublin/news-...

#RCSIEngage

1 3 2

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 13d

Attending a conference soon? Don't just collect free pens - Prof Carla Moran and Dr Donal O'Malley discuss ways to make it count!

Get practical tips on networking, presenting, and making the most of research events in our video:

Making Discoveries In Medicine: A Guide for Early Career Researchers

For many patients with rare disease, the first and biggest challenge isn't treatment, it's a diagnosis. In our latest video, we explore the vital role researchers play in finding answers. You don't have to be a principal investigator to advance medicine, research is a diverse field. No matter your

www.youtube.com

3

Reposted by Rare Disease Clinical Trial Network

Evidence Synthesis Ireland @evidsynirl.bsky.social · 15d

Our colleagues at the @hrb-tmrn.bsky.social are hosting a webinar of interest to the evidence synthesis community. Prof. Ben W. Mol discusses the 'Scientific Integrity of Randomised Trials in Systematic Reviews' at 11am this Thursday. Register at universityofgalway-ie.zoom.us/webinar/regi...

Welcome! You are invited to join a webinar: Prof. Ben W. Mol - Scientific Integrity of Randomised Trials in Systematic Reviews. After registering, you will receive a confirmation email about joining t...

While it has long been assumed on face value that all published clinical research is based on true data, there is increasing evidence that many clinical trial data are not trustworthy. Estimates sugge...

universityofgalway-ie.zoom.us

1 3

Reposted by Rare Disease Clinical Trial Network

HRB-TMRN @hrb-tmrn.bsky.social · 15d

The HRB-TMRN & UCC CRF are happy to unveil the schedule for the 9th Annual HRB-TMRN Trials Methodology Symposium - Trials That Matter: Pragmatism, Inclusion and Informativeness in Health Research. On 13th November 2025 @ The Kingsley Hotel, Cork. Register: eventbrite.ie/e/hrb-tmrn-9...

1 2

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15d

@erdera.bsky.social @eurordis.bsky.social

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 15d

A huge welcome to Dr. Ilias Dimeas! A Respiratory Medicine Physician from Greece (Univ of Thessaly), Ilias explores how lung ultrasound can detect early signs of vasculitis. An exciting innovation in RD research! He joins RDCat as a Rare Disease Fellow at @svuh.bsky.social and Tallaght U Hospital.

A man holding medical equipment wearing a lab coat

1 1

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 17d

@hrbireland.bsky.social @ucdresearch.bsky.social @ucddublin.bsky.social @rareireland.bsky.social @erdera.bsky.social @eurordis.bsky.social @roinnslainte.bsky.social @hselive.bsky.social

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 17d

RDCTN and RDCat teams met last week to review the National Rare Disease Strategy 2025-2030. We support fostering innovation to enhance diagnosis, treatment, and support for people living with rare diseases, and are encouraged by the focus on patient partnership and research.

Five people sitting around a table discussing

1 1

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21d

@hrci.bsky.social @hrb-tmrn.bsky.social @rarediseasesint.bsky.social @erdera.bsky.social @eurordis.bsky.social

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 21d

Small numbers, big impact! Rare diseases have small patient numbers, which means that every researcher and every patient is part of a tight-knit effort. What's it like to be in a community where every single contribution makes a difference? Listen in:

Making Discoveries In Medicine: A Guide for Early Career Researchers

For many patients with rare disease, the first and biggest challenge isn't treatment, it's a diagnosis. In our latest video, we explore the vital role researchers play in finding answers. You don't have to be a principal investigator to advance medicine, research is a diverse field. No matter your

www.youtube.com

1 3

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 22d

#hseppp @marcikayrn.bsky.social @cassandradinius.bsky.social @ucdresearch.bsky.social @hrbireland.bsky.social

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 22d

Our PPI Liaison Officer and a RDCTN PPI Partner were delighted to attend the HSE Patient & Public Partnership conference today. They presented a poster reflecting on the 'many hats' that PPI Partners wear, and how this enriches involvement and encourages an inclusive approach.

1 2 4

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 23d

Got a big idea that needs a little help to grow? 🌿

Our €10,000 Seed Funding Award could help take your research to the next level!

We're launching the 2025 application cycle very soon! Get notified via our mailing list:

Rare Disease Clinical Trial Network, Ireland

Rare Disease Clinical Trial Network, Ireland Email Forms

eepurl.us8.list-manage.com

1 2

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 27d

An inspirational day at the 'I Am Number 17' book launch! RDCTN & RDCat teams were delighted to connect with the National Rare Diseases Office. Well done to all, especially the 17 extraordinary 'change makers' for sharing insights into what it's like to live with a rare disease.

Four people gathered around a poster holding the book

1

Reposted by Rare Disease Clinical Trial Network

HRB-TMRN @hrb-tmrn.bsky.social · Sep 9

Join us on the 25th September at 11am (UTC+1) when Prof. Ben W. Mol, Prof. of Obstetrics and Gynaecology at
@monashuniversity.bsky.social
, discusses 'Scientific Integrity of Randomised Trials in Systematic Reviews'. To register: universityofgalway-ie.zoom.us/webinar/regi...

2 1

Reposted by Rare Disease Clinical Trial Network

retinaint.bsky.social @retinaint.bsky.social · Sep 9

Are you a young person living with a retinal condition? Register today for the Retina International Youth World Conference! Saturday, September 27 at 4pm CET> us06web.zoom.us/meeting/regi... #Conference #Science #Retina #RetinaYouth

3 3

Reposted by Rare Disease Clinical Trial Network

JARDIN Joint Action @jardinjointaction.bsky.social · 29d

📢 Exciting news! The JARDIN General Assembly will take place in Vilnius, Lithuania on 7–10 Oct 2025.

A key meeting of our Joint Action to support integration of European Reference Networks (ERNs) into national healthcare systems, co-funded by the @ec.europa.eu.

Info 👉 jardin-ern.eu/event/jardin...

2 2

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · Sep 9

@asbmr.bsky.social @in4kids.bsky.social @hrb-tmrn.bsky.social @svuh.bsky.social @ucddublin.bsky.social