Viktor Orban: "There will be NO Pride events in Hungary!" Hungarians: "Challenge accepted"

The Last Message of Hossam to be shared after his death: The will in alt text ⏬️

At the Irish Health Research Forum, we're discussing the vital role of patient registries. We’ve just shown this powerful video on why they matter. @hrci.bsky.social #HealthData #PatientRegistries #RareDisease #HealthResearchMatters m.youtube.com/watch?v=1hKH...

Great to meet Minister for Health, Jennifer Carroll MacNeill, yesterday. We talked about the value of embedding research in the health service & the key role of health research charities. Looking forward to staying in touch. @hrci.bsky.social @brianmartinlynch.bsky.social @roinnslainte.bsky.social

The lovely people in the @rarediseasectn.bsky.social have done a fantastic job of bringing a diverse range of perspectives together for the #RareResearch25 conference. Researchers, clinicians, industry reps, regulators and many patients and advocates in the room.

A very insightful piece on the current situation and needs in rare disease research in Ireland. Nicely timed for the @rarediseasectn.bsky.social conference happening in @ucddublin.bsky.social today.

Anyone looking to Europe for research & interested in chromatin biology then we have opportunities in UCD, Ireland. Welcoming & diverse group & we would love to add thanksgiving to our seasonal celebrations! Postdoc: conwaychromatinlab.com/team PhD (MSc not required): www.coughlan-lab.com/team

At the annual conference of the SPHeRE Network, Roisín Shortall says there’s never been proper public debate about the kind of health service we should be providing in Ireland. Universal healthcare, free at the point of use, is still not a reality. Why do we tolerate? @sphereprogramme.bsky.social

This will series will be very interesting. Great to see @dublincityuni.bsky.social driving conversation on big topics.

Many new accounts added to this starter pack to help you find people who are talking about health research in Ireland. Let me know if you should be included. #HealthResearchMatters go.bsky.app/MdNAY9L

🌍 Today is #RareDiseaseDay 2025! We stand with the 300 million people worldwide living with rare diseases. By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future! 🔗 Read more: metab.ern-net.eu/rare-disease... #RareDiseaseDay2025

After years of advocacy from many groups & the dedicated work of the HSE & @roinnslainte.bsky.social, the HSE Health App has been launched. It's an early version but marks a significant step forward - finally giving people in Ireland access to their own health data. www2.hse.ie/health-app/

Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025. #HealthResearchMatters

Great news from #iphaconference2025! Minister for Health Jennifer Carroll MacNeill expresses strong support for clinical trials and plans to meet the National Clinical Trials Oversight Committee next week. A positive step for #CancerResearch, #ClinicalTrials & patients! 👏💙@roinnslainte.bsky.social

Happy International Day of Women and Girls in Science! Today, we celebrate the brilliant women and girls pushing the boundaries of discovery, innovation, and progress. Their contributions shape our world in ways both seen and unseen. #HealthResearchMatters

As a Star Trek fan and a scientist, I love this image, because Dr. Jemison is both a hero *AND* one of the few people for whom we can say "here she is doing her space job" in two totally different contexts. 🧪

Our goal, as reflected in our 2025 Position Paper, is to ensure that a supportive & enabling framework exists in Ireland to facilitate impactful health & social care research. With the Dail resuming tomorrow, we're asking elected reps & policy makers to prioritise 3 asks hrci.ie/hrci-positio...

At an @ria.ie symposium on improving the prospects for fundamental biomedical research in Ireland. Inputs by David Henshall of @rcsi.bsky.social and others closely align to our call for more State investment in R&D. hrci.ie/hrci-positio... #FundamentalResearch #HealthResearchMatters

This is a very important moment for patients and #genomics in #Europe and #Ireland. Kudos to @rcsi.bsky.social and other collaborators.

This has been a wish for many in the genetics/genomics community in Ireland for a long time. I'm so pleased to see it coming to fruition. #genomics #PersonalisedMedicine #HealthResearchMatters www.gov.ie/en/press-rel...

"Here’s where projects like Bluesky come in. Yes, at first glance, it looks like just another Twitter clone. But that’s just there to make users comfortable using it. Beneath that familiar surface lies something revolutionary: actual user control." www.techdirt.com/2025/01/27/e...

Our latest HRCI blog post examines the Programme for Government and what it means for health research. Many of the commitments are broad, leaving scope for engagement with the health research community towards practical and innovative approaches. hrci.ie/news/blog-ne... #HealthResearchMatters

I spent some time going through the new Programme for Government in Ireland and share my thoughts here for anyone interested in health research, clinical trials, life sciences and the importance of it all for improving health and social care. hrci.ie/news/blog-ne...

God I just love that people are getting to do this stuff!

🎉 Was great to award Prof. Mary McCarron, @tcddublin.bsky.social as winner of the @hrci.bsky.social Research Impact Award, for her work improving the lives of people with intellectual disabilities & dementia. Research was funded by @alzheimersocirl.bsky.social & the HRB. 👉 hrci.ie/hrci-hrb-joi...

Congratulations to Professor Mary McCarron and her incredible team in Trinity College Dublin for winning Health Research Charities Ireland's research impact award, and to @alzheimersocirl.bsky.social who co-funded the winning project through the HRCI-HRB Joint Funding Scheme #healthresearchmatters

@avrilkennan.bsky.social introduces the celebrations of the #HRCI #HRB Joint Funding Scheme at the Mansion House. This work has, over many years, exemplified #CivicEngagement at its best. 👏👏👏

www.rezoomo.com/job/73141/?C... We are recruiting! Dublin ain't bad? Have a 👀?

Excellent point about those who the research is on not being able to access it!

Even those of us researchers in the Not-For-Profit world cannot access it. I can now through my part time Doctoral work but trying to gather evidence for policy and services without that access is very very difficult.

Sometimes I rail against the "tyranny of achievement". Big achievements are built on the small things of everyday life, and for some of us, these things can be bloody difficult and achieving them should be celebrated. Let’s recognise the #strugglesofsmallthings and our daily victories

Good point Tim. It's difficult to grasp how so much control over the outcomes of publicly funded research still lies with for-profits. Another frustration is the fact that patients who contribute their bodies, time, & energy to health research often can't access the resulting publications.

If you're looking for a Christmas present, books are always good... 😊😉🎅 press.princeton.edu/books/paperb..., press.princeton.edu/books/paperb... (just sayin'...)

Prof Des Tobin, @ucddublin.bsky.social, asks, if we use AI genomic health prediction to give information about people’s future health, ‘will they be able to bulldoze through life like the rest of us?’ @ria.ie & @acmedsci.bsky.social policy workshop on #genomics & #AI. #HealthResearchMatters

At a policy workshop on #genomics & #AI, hosted by @ria.ie & @acmedsci.bsky.social. Generating lots of discussion about the potential for medicine, risk of exacerbating health inequalities, how to approach patient consent etc. In the words of a speaker, ‘it’s complicated’. #HealthResearchMatters

"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-...

A starter pack for people interested in health research in Ireland. Taking an inclusive approach to include clinical, social, fundamental, population, health services research etc. & all roles. Check if you're on it and, if not, let me know! 😊 #HealthResearchMatters go.bsky.app/MdNAY9L

If you want to get better at public and patient involvement #PPI in clinical research, this is probably the best 15 minutes you could spend. Some impressive video editing too @dobe1.bsky.social! #HealthResearchMatters

A positive story of using AI, technology and strong stakeholder engagement to come up with innovative solutions with and for older adults. Well done to the School of Health & Human Performance in @dublincityuni.bsky.social & colleagues. 🧪 #HealthResearchMatters www.dcu.ie/shhp/news/20...

Sharing our starter pack of charities working within health, medical and social care research in Ireland. Please send a DM if your org would like to be added! go.bsky.app/2iqvvqh

Save the date! 📅 Thursday, 10th April We are thrilled to announce the Rare Disease Research Conference 2025 in UCD O'Reilly Hall. The Abstract Submission will be available soon, stay tuned!

A suggested doorstep question for the Irish general election #GE2024: “Government investment in R&D is far below the EU average, with only a small fraction for health research. Will you commit to increasing Ireland’s investment in health research, to match the EU average?” hrci.ie/hrci-manifes...

Great to see this @debraireland.bsky.social, @sineadhickey.bsky.social & @maynoothuni.bsky.social! 👏 #HealthResearchMatters

Hello familiar faces & new friends! Let's start with a huge thank you to all who joined us at the Irish Health Research Forum on Nov 14 to discuss 'Public trust in health research'. There was a lot of positive input & we're looking forward to sharing the report &reccs in 2025 #HealthResearchMatters

Well done @siliconrepublic.bsky.social and @annodea.bsky.social on a brave decision. It's not an easy move when your business is reliant on communications but hopefully we will all enjoy more meaningful engagements here.

We don't all have to agree, but it's good to be somewhere that being disagreeable isn't rewarded.

Two articles. Both true. It’s important to stay mindful of the echo chamber. But also, what a relief to be in an online space again where we can focus on driving change - positively & inclusively, in whatever way we choose to do that. www.theguardian.com/technology/2...

This morning, our judges are meeting to review the entries for the Health Research Charities Ireland (HRCI) Research Impact Award. hrci.ie/joint-fundin... Competition is tough! Looking forward to revealing the winner at Dublin's Mansion House on December 11th. #HealthResearchMatters

With Genuity/GMI in Ireland in the rear view mirror, this story current and 23&Me looming, we have to start talking about legislative solutions. When companies go out of business, what should happen with your private data? www.bbc.com/news/article...