iiinova — where your digital self keeps evolving

Reposted by Avril Kennan

17, the OG @surfpunk.bsky.social · 28/06/2025

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

Tens of thousands of Hungarians celebrating Pride and marching across a bridge over the Danube in Budapest

031

Reposted by Avril Kennan

𝑴𝒐𝒏𝒂 𝑯𝒊𝒋𝒂𝒛𝒊 🇵🇸🫒𝑰𝒏 𝑮𝒂𝒛𝒂 @monahijazi.bsky.social · 24/03/2025

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

The Last Message of Hossam — to be shared after his death:

"If you’re reading this, it means I’ve been killed — likely targeted — by Israeli occupation forces.

When this all began, I was only 21 years old — a university student with dreams like anyone else.
For the past 18 months, I’ve dedicated every moment of my life to my people.
I documented the horrors in northern Gaza minute by minute, determined to show the world the truth they tried to bury.

I slept on sidewalks, in schools, in tents — wherever I could.
Every day was a fight to survive.
I endured hunger for months, yet I never left my people.

By God, I did my duty as a journalist.
I risked everything to report the truth.
And now, I’ve finally found rest — something I hadn’t known in the past 18 months.

I did all of this because I believed in the Palestinian cause.
I believe this land is ours, and it was the greatest honor of my life to die defending it — and serving its people.

Now I ask you:
Do not stop talking about Gaza.
Do not let the world look away.
Keep resisting. Keep telling our stories — until Palestine is free.

— One last time,
Hossam Shabat, from northern Gaza.

6184112

Avril Kennan @avrilkennan.bsky.social · 15/05/2025

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...

0103

Avril Kennan @avrilkennan.bsky.social · 08/05/2025

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

0134

Avril Kennan @avrilkennan.bsky.social · 10/04/2025

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.

An image of 5 speakers and chairs on the podium with a slide behind them showing the conference title.

0133

Avril Kennan @avrilkennan.bsky.social · 10/04/2025

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.

051

Reposted by Avril Kennan

Eric Conway @conwayer1.bsky.social · 01/03/2025

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

099

Avril Kennan @avrilkennan.bsky.social · 04/03/2025

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

030

Avril Kennan @avrilkennan.bsky.social · 04/03/2025

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

021

Avril Kennan @avrilkennan.bsky.social · 28/02/2025

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

1126

Reposted by Avril Kennan

European Reference Network - MetabERN @ernmetabern.bsky.social · 28/02/2025

🌍 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

0163

Avril Kennan @avrilkennan.bsky.social · 27/02/2025

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/

www2.hse.ie

HSE Health App

The HSE Health App is a new digital health service from the HSE that gives our patients secure personalised access to their health information, hospital appointments, and more.

040

Avril Kennan @avrilkennan.bsky.social · 26/02/2025

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

041

Reposted by Avril Kennan

Cancer Trials Ireland @cancertrialsie.bsky.social · 26/02/2025

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

041

Reposted by Avril Kennan

Health Research Charities Ireland @hrci.bsky.social · 11/02/2025

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

042

Reposted by Avril Kennan

David Shiffman, Ph.D. 🦈 @whysharksmatter.bsky.social · 05/02/2025

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. 🧪

Image of Dr. Mae Jemison, actual astronaut and Star Trek guest star

151700388

Reposted by Avril Kennan

Health Research Charities Ireland @hrci.bsky.social · 04/02/2025

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...

0104

Avril Kennan @avrilkennan.bsky.social · 05/02/2025

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

hrci.ie

HRCI Position Paper 2025 -

Health Research Charities Ireland (HRCI) Position Paper 2025. Contains 3 asks for elected representatives and policy makers in Ireland.

081

Reposted by Avril Kennan

Killian Hurley @killianhurley.bsky.social · 01/02/2025

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

051

Avril Kennan @avrilkennan.bsky.social · 31/01/2025

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...

gov.ie

Minister for Health announces the establishment of a Genome of Ireland project to advance disease prediction and prevention

1122

Avril Kennan @avrilkennan.bsky.social · 31/01/2025

"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...

techdirt.com

Empowering Users, Not Overlords: Overcoming Digital Helplessness

Disclosure: I’m on the board of Bluesky, so feel free to take as many grains of salt as you want in reading it, though all of it applies equally to other decentralized social media ecosys…

010

Reposted by Avril Kennan

Health Research Charities Ireland @hrci.bsky.social · 21/01/2025

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

032

Avril Kennan @avrilkennan.bsky.social · 22/01/2025

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...

hrci.ie

HRCI Blog, News & Media - HRCI Blog, News & Media

A round up of HRCI news, media and blog posts written by HRCI CEO Dr Avril Kennan, HRCI staff and invited contributors.

041

Avril Kennan @avrilkennan.bsky.social · 19/12/2024

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

210

Avril Kennan @avrilkennan.bsky.social · 16/12/2024

🎉 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...

hrci.ie

HRCI/HRB Joint Funding Scheme Celebration -

Announcing the winner of the 2024 HRCI Research Impact Award and celebrating the successful projects in the 2204 HRCI/HRB Joint Funding Scheme

0134

Reposted by Avril Kennan

Sarah Delaney @sarahdelaney73.bsky.social · 12/12/2024

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

062

Reposted by Avril Kennan

Michael Foley @civicmichael.bsky.social · 11/12/2024

@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. 👏👏👏

131

Reposted by Avril Kennan

Tim Nicholson @timnicholson.bsky.social · 04/12/2024

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

021

Reposted by Avril Kennan

Zoe Hughes @zoeghughes.bsky.social · 04/12/2024

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.

011

Reposted by Avril Kennan

Sarah Delaney @sarahdelaney73.bsky.social · 04/12/2024

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

221

Avril Kennan @avrilkennan.bsky.social · 04/12/2024

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.

281

Reposted by Avril Kennan

Kevin Mitchell @wiringthebrain.bsky.social · 04/12/2024

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

covers of two books - Innate and Free Agents

55911

Avril Kennan @avrilkennan.bsky.social · 28/11/2024

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

040

Avril Kennan @avrilkennan.bsky.social · 27/11/2024

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

Image of audience from behind with event title slide shown.

060

Avril Kennan @avrilkennan.bsky.social · 27/11/2024

"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-...

ipsos.com

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.

052

Avril Kennan @avrilkennan.bsky.social · 27/11/2024

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

go.bsky.app

Health research in Ireland

Join the conversation

2135

Avril Kennan @avrilkennan.bsky.social · 26/11/2024

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

052

Reposted by Avril Kennan

Health Research Charities Ireland @hrci.bsky.social · 25/11/2024

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

084

Reposted by Avril Kennan

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 25/11/2024

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!

Flyer that says 'Save the Date!' Rare Disease Research Conference 2025 10th April, UCD O'Reilly Hall with a graphic of people connected by lines to show networking.

064

Avril Kennan @avrilkennan.bsky.social · 20/11/2024

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...

hrci.ie

HRCI Manifesto - General Election 2024 -

HRCI members demand a strong, forward-thinking Programme for Government which includes a genuine commitment to improving health outcomes and reducing the burden of illness. Investing in health researc...

082

Reposted by Avril Kennan

Health Research Charities Ireland @hrci.bsky.social · 18/11/2024

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

081

Avril Kennan @avrilkennan.bsky.social · 19/11/2024

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.

140

Reposted by Avril Kennan

Michael Foley @civicmichael.bsky.social · 12/11/2024

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

041

Avril Kennan @avrilkennan.bsky.social · 12/11/2024

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...

theguardian.com

Bluesky adds 700,000 new members as users flee X after the US election

Social media platform has become a ‘refuge’ from the far-right activism on X, experts say, after Elon Musk teamed up with Donald Trump

210

Avril Kennan @avrilkennan.bsky.social · 12/11/2024

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

hrci.ie

HRCI Research Impact Award 2024 -

Funding Scheme How It Works Open Research Calls 2023/2024 Timeline FAQ PPI in the Joint Funding Scheme Learnings from a study on the JFS Scheme Impact HRCI Research Impact Award HRCI Research Impact A...

000

Reposted by Avril Kennan

John Greally @greally.bsky.social · 09/11/2024

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...

bbc.com

I gave my DNA to tracking company - then it vanished

Customers of Atlas Biomed are angry and worried about what's happened to the highly sensitive data they shared.

174