CEO, Health Research Charities Ireland @hrci.bsky.social (views own). PhD in genetics. Ambitious for a better world through collaboration & inclusion. She/Her 🤹‍♀️ PPI | research impact | health data | evidence-based policy | genomics | rare diseases...https://bsky.app/profile/avrilkennan.bsky.socialhttps://bsky.app/profile/avrilkennan.bsky.social/post/3lp7cnfd4222aAt 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 https://m.youtube.com/watch?v=1hKHTsrU6q815 May 2025 10:30 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lp7cnfd4222ahttps://bsky.app/profile/avrilkennan.bsky.social/post/3lonlzexlvk2pGreat 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.social08 May 2025 09:30 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lonlzexlvk2phttps://bsky.app/profile/avrilkennan.bsky.social/post/3lmhpse43jc2nThe 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.10 Apr 2025 14:31 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lmhpse43jc2nhttps://bsky.app/profile/avrilkennan.bsky.social/post/3lmh7ku5xis2qA 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. [contains quote post or other embedded content]10 Apr 2025 09:40 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lmh7ku5xis2qhttps://bsky.app/profile/avrilkennan.bsky.social/post/3ljkwthhovk2cAt 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.social04 Mar 2025 16:59 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3ljkwthhovk2chttps://bsky.app/profile/avrilkennan.bsky.social/post/3ljkkvqd3bs2hThis will series will be very interesting. Great to see @dublincityuni.bsky.social driving conversation on big topics. [contains quote post or other embedded content]04 Mar 2025 13:26 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3ljkkvqd3bs2hhttps://bsky.app/profile/avrilkennan.bsky.social/post/3ljaf4usvgk2wMany 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 [contains quote post or other embedded content]28 Feb 2025 12:16 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3ljaf4usvgk2whttps://bsky.app/profile/avrilkennan.bsky.social/post/3lj6d2cp2yc2wAfter 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/ https://www2.hse.ie/health-app/27 Feb 2025 16:33 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lj6d2cp2yc2whttps://bsky.app/profile/avrilkennan.bsky.social/post/3lj3ktn3o3k27Good to see a strong focus both on patients and clinical trials at the #IPHAconference2025. #HealthResearchMatters26 Feb 2025 14:15 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lj3ktn3o3k27https://bsky.app/profile/avrilkennan.bsky.social/post/3lhghnehmns2hAt 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. https://hrci.ie/hrci-position-paper-2025/ #FundamentalResearch #HealthResearchMatters https://hrci.ie/hrci-position-paper-2025/#FundamentalResearch05 Feb 2025 11:26 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lhghnehmns2hhttps://bsky.app/profile/avrilkennan.bsky.social/post/3lgzqdbi3pk26This 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 https://www.gov.ie/en/press-release/dbfe4-minister-for-health-announces-the-establishment-of-a-genome-of-ireland-project-to-advance-disease-prediction-and-prevention/31 Jan 2025 09:57 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lgzqdbi3pk26https://bsky.app/profile/avrilkennan.bsky.social/post/3lgzln7y3f226"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." https://www.techdirt.com/2025/01/27/empowering-users-not-overlords-overcoming-digital-helplessness/31 Jan 2025 08:33 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lgzln7y3f226https://bsky.app/profile/avrilkennan.bsky.social/post/3lgdb6iyshk2uI 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. https://hrci.ie/news/blog-news-and-media/22 Jan 2025 11:27 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3lgdb6iyshk2uhttps://bsky.app/profile/avrilkennan.bsky.social/post/3ldobj3ujr22lGod I just love that people are getting to do this stuff! [contains quote post or other embedded content]19 Dec 2024 16:17 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3ldobj3ujr22lhttps://bsky.app/profile/avrilkennan.bsky.social/post/3ldgdgwb2qs2m🎉 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. 👉 https://hrci.ie/hrci-hrb-joint-funding-scheme-celebration/#16 Dec 2024 12:30 +0000at://did:plc:mni75cbssisuunjzc5vctddh/app.bsky.feed.post/3ldgdgwb2qs2m