Rare Disease Clinical Trial Network

A screencapture of the job advert with the logo for MMUH and job title

You're not seeing double, we're hiring for two posts! ✌️

Ready for a new adventure? We're also looking for a Rare Cardiology & Respiratory Registry Data Entry Manager at MMUH in Dublin.

Role: Grade V, Permanent Full-Time
Deadline: August 21, 2025

www.rezoomo.com/job/...

A screencapture of the job advert with the logo for MMUH and job title

We're on the lookout for a new coworker! 👀

Join the team at MMUH as a Rare Cardiology & Respiratory Registry Data Systems Manager, and help us improve care

Role: Grade V, Permanent Part-Time
Deadline: August 21, 2025

Apply now to make a difference! www.rezoomo.com/job/...
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The Research Ireland Investigators Programme supports all disciplines across the full spectrum of endeavour - from curiosity-driven research that generates new knowledge, to applied research that seeks to develop solutions and innovations. Visit: www.researchireland.ie/funding/investigators/

Feeling left out because the research surveys are for everyone else? We see you, healthcare professionals! This one is just for you! 👇

Our friends in UCC are conducting a brief survey to understand how digital endpoints and PROMs are utilized: www.surveymonkey.com/r/MK5Q8F7

Are you a patient/community organisation or PPI contributor looking to host an event for the #PPIFestival2025 in October?

Check out this Festival Fund via @ppi-galway.bsky.social !

Muscular Dystrophy Ireland (MDI) is taking part in the HRCI/HRB Joint Funding Scheme 2025/26 & are currently seeking expressions of interest for projects that align with MDI’s Research Strategy. Find more info on the call hrci.ie/joint-fundin... https://hrbireland.bsky.social‬ #HealthResearchMatters

We're delighted to announce the HRCI/HRB Joint Funding Scheme is once again running for 2025/26. Researchers, visit our website hrci.ie/joint-fundin... to get all the info you need, including a video which goes through the scheme step by step #HealthResearchMatters @hrbireland.bsky.social

Whether you're directly involved in PKU management or not, your perspective contributes to a fuller understanding and may inform processes such as access to medicines, service provision +

More than one family member per household may participate. Best completed on a laptop/PC🙏

European Observatory of Rare Diseases reveals that Europeans find conditions for patients with rare diseases are unacceptable ASAP FOR CHILDREN has published the results of its third European Rare Disease Observatory conducted by Ipsos.

"More than two-thirds of Europeans would not accept discovering that no research is being carried out to develop a treatment for the rare disease of someone close to them".

Makes the activities of the @rarediseasectn.bsky.social & initiatives like ERDERA so important.
www.ipsos.com/en/european-...

Talks about trials methodology from the @rarediseasectn.bsky.social conference are now in our repository:
Platform Trials: Dr Leanne Hays
Study Within A Trial: Prof. Valerie Smith
Clinical Trial Designs: New Options for the Study of Rare Diseases: Prof. Jeffrey Krischer
hrb-tmrn.ie/training-edu...

Have you heard about European Rare Disease Research Alliance (ERDERA)? Focused on faster diagnoses, advancing treatments, and transforming lives. We're proud to be a partner - it's a game-changer for over 30M people with rare disease across Europe! 🌍 https://erdera.org/

Mr Killian MacDonald, Gilead Sciences Ireland & Clinical Research Exchange Group, IPHA Clinical Trials - Industry Perspective: K MacDonald

How is Ireland punching above it weight in rare disease research?

Mr Killian MacDonald (Gilead & IPHA) shared insider insights on industry's evolving role in rare trials and what collaboration looks like.

▶️ Watch, from our conference: www.youtube.com/watc...

🌍 Over 150 participants from 30 underrepresented countries joined the first #ERDERA Jamboree in Prague & online! The event spotlighted inclusion in #RareDisease diagnostic research & the need for equitable access to innovation. 🔗 Read more: https://loom.ly/GoLgpvk

Why medical research needs to be more inclusive — and what we’re doing about it A new campaign at UCC aims to make health research more inclusive, to include under-served groups like women, ethnic minorities, LGBTQ+ individuals, older adults, and people with disabilities

A fantastic article in today's Irish Examiner by our Director of Education, Prof. Frances Shiely, highlighting the need for more Inclusive Clinical Research and the great work being done by the SENSITISE (@sensitise-eu.bsky.social).

Be sure to have a read: www.irishexaminer.com/opinion/comm...

Did you catch our Summer Newsletter last week? ☀️

It's our quarterly update on rare disease research, right here in Ireland! It's the perfect way to stay in the loop on research news, events and opportunities.

Sign up now to stay informed: eepurl.us8.list-mana...

Professor Stuart Ralston, University of Edinburgh Clinical Trial Spotlight: Rare Bone Disorders - TOPaZ/ZiPP-LTE

#ThrowbackThursday

At #RareResearch25, Prof Stuart Ralston (University of Edinburgh) discussed how trials TOPAZ & ZIPP are advancing treatment for rare bone disorders across Europe with genetic testing and targeted intervention.

▶️ Rewatch his talk: www.youtube.com/watc...

We’re proud to share our 2025 Research Report — showing how your support is driving #EBresearch that brings real hope, improves lives, and ensures the voice of the #EBcommunity is at the heart of the research process.

🔗Read here: debra.ie/news/our-lat...

#HealthResearchMatters #PPI #EB

Professor Elisabeth Bendstrup, Aarhus University Clinical Trial Spotlight: Autoimmune Pulmonary Alveolar Proteinosis-IMPALA 2: Prof E Bendstrup

#TuesdayTrivia

What’s Autoimmune Pulmonary Alveolar Proteinosis and how is it being studied?

Prof Elisabeth Bendstrup presented the IMPALA 2 trial, offering new hope for this rare lung condition. One of many trials improving RD research.

▶️Watch back: www.youtube.com/watc...

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The New Foundations Scheme will remain open for applications until 17th July 2025.

The Scheme supports eligible researchers who intend to pursue research, networking and/or dissemination activities within & across the diversity of disciplines.

Visit:
www.researchireland.ie/funding/new-foundations/

Mr Daniel Mikula, Rare Disease Research Catalyst Consortium Rare Disease Research Catalyst Consortium – Overview: D Mikula

#ThrowbackThursday

What is RDCat and how does it support rare disease research? Mr Daniel Mikula explained the Rare Disease Research Catalyst Consortium, and how collaboration accelerates research and improves outcomes.

▶️ Learn more from his session: youtu.be/kvJYbyuaTe0

Ms Elisabeth Humbert-Dorfmüller, ERN Lung ERN Lung Registries & Academy: E Humbert-Dorfmüller

#TuesdayTrivia

Did you know ERN Lung supports two registries for rare lung diseases? 🌬️

Ms Elisabeth Humbert-Dorfmüller showcased how the ERN Lung Registries & Academy empower rare lung research across Europe.

▶️ Watch her talk at our conference: www.youtube.com/watc...

🧬 Explore this topic, including an article in Frontiers in Science.

📚 Read it here: lnkd.in/dJMYHfDq

📢 Join the conversation on 9 July | 16:00–17:30 CEST at the next NANOSPRESSO webinar.

🔗 Register here: lnkd.in/dX3hcdzr

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We are pleased to announce the launch of the pilot Disability Policy and Supplemental Grant.

This initiative aims to support researchers with a disability/disabilities by funding required, eligible accommodations.

For more information visit:

www.researchireland.ie/news/disability-policy/

Delighted to join Rare Diseases Ireland at the All-Party Group meeting on Rare Diseases to launch our call for rare diseases to be included on the schedule for Ireland’s EU Presidency.
@oireachtasnews.bsky.social #RareDiseases #HealthResearchMatters

Nominations Now Open to all RDI members for Mapping Rare & the 2025 Aurora Awards! 🌟

Is your organization working on an innovative, inclusive, or impactful initiative for the rare disease community?

📅 Deadline: Friday, 18 July
📩 Submit your nomination now: lnkd.in/dPrJQN6j

What are registries, and why are they important? Watch this quick video to learn more!

Ms Emer Cooke, European Medicines Agency Clinical Trials - Regulatory Perspective: E Cooke

#ThrowbackThursday

What do regulators want rare disease researchers to know? Ms Emer Cooke, European Medicines Agency, shared the EU regulatory perspective and how it supports better, faster rare disease trials.

▶️ Watch back from our conference: www.youtube.com/watc...

Have your say: EU AI Act consultation on high-risk systems - ERDERA The European Commission has opened a public consultation to gather feedback on the implementation of the AI Act's rules concerning high-risk AI systems. The aim is to collect practical examples, clari...

🗣️ The #EU has opened a public consultation on how to implement #AI Act rules for high-risk systems. 🤝 Help shape future guidelines with your feedback. Read more here👉 loom.ly/6VB9xrQ #PublicConsultation #ERDERA @ec.europa.eu

Patient organisations: Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research.
🔐 Confidential & 🤝 Co-created with patients
🔗 Take the survey here: shorturl.at/ePVuL
📄 Learn more: shorturl.at/c03db @eurordis.bsky.social

r Marco Rosario Capodiferro, Trinity College Dublin and Pathway awardee, James Lawless TD, Minister for Further and Higher Education, Research, Innovation and Science, and Dr Ruth Freeman, Director of Research for Society at Research Ireland.

Minister for Further and Higher Education, Research, Innovation and Science, James Lawless, has today announced €23 million in funding to support early-career researchers through the Research Ireland Pathway Programme. Read more: www.researchireland.ie/news/pathways/ #ResearchIreland