iiinova — where your digital self keeps evolving

Reposted by Cassandra Dinius

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 17/09/2025

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.

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Reposted by Cassandra Dinius

Health Research Charities Ireland @hrci.bsky.social · 24/06/2025

We're delighted to see the work of Dr Rebecca Ahrens-Nicklas, a gene therapy expert at the Children's Hospital of Philadelphia (CHOP), being highlighted in this piece. news.sky.com/story/baby-g... Dr Ahrens Nicklas was previously funded via the HRCI HRB Joint Funding Scheme and MSD Action Foundation

news.sky.com

Baby gets world's first personalised gene therapy treatment

Nine-and-a-half-month-old KJ Muldoon has a rare metabolic condition that meant he spent the first months of his life in hospital on a very restrictive diet.

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Reposted by Cassandra Dinius

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 19/06/2025

Big ideas need a little help to grow... 🌿 We’re getting ready to launch our 2025 Seed Funding Award — €10,000 for emerging and early career researchers! It’s our third year running, and we can't wait to see what this next round will spark. Watch this space for details!

An image of a microscope with the text "The award is designed to support early and mid career researchers to build pilot data aimed at developing an intervention or preparing for a clinical trial. We are committed to keeping the patient voice at the heart of all our work and encourage meaningful and valuable collaboration with Public & Patient partners in proposed applications."

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Reposted by Cassandra Dinius

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 19/05/2025

A brilliant day at the Irish Health Research Forum! The theme, "Is it time to get serious about patient registries?" sparked rich conversations and the RDCat and RDCTN teams were thrilled to be part of it last week. Huge thanks to HRCI for a valuable event! #HealthResearchMatters

Three people standing in front of a pullup poster at the event

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Reposted by Cassandra Dinius

Sarah Delaney @sarahdelaney73.bsky.social · 04/04/2025

Are you delivering #PPI training? If you’d like to evaluate the effectiveness and impact of your training, the PPI Ignite Network WP1 team has developed a tool for evaluating PPI training, with survey bank, facilitator's guide and templates. You can find it here: ppinetwork.ie/resource/eva...

ppinetwork.ie

Evaluating PPI Training: A Resource for Facilitators • PPI Ignite Network

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Reposted by Cassandra Dinius

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 11/02/2025

We are delighted to announce a short extension to the deadline for abstracts for the Rare Disease Research Conference 2025! Don't miss the chance to submit your case study or rare disease research for consideration for poster presentation by 24th February! docs.google.com/form...

A slide with green, purple and blue background that says 'Rare Disease Research Conference 2025, Abstract Deadline Extended'

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Reposted by Cassandra Dinius

Dementia Research Network Ireland @drni.bsky.social · 07/02/2025

🥳DRNI are thrilled that @alzheimersocirl.bsky.social Dementia Trials Ireland & @neuroscienceirl.bsky.social are offering travel bursaries supporting ECR's attending DRNI ECR Day in @CPH_QUB on 04 March! To find out more: ASI: tinyurl.com/3zvf9tvh NSI: tinyurl.com/52hssrb5 DTI: tinyurl.com/37y5dfyt

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Reposted by Cassandra Dinius

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

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Reposted by Cassandra Dinius

Health Research Charities Ireland @hrci.bsky.social · 12/02/2025

Whether it's the research you fund, your support for PPI, events you organise, or other research initiatives, understanding and demonstrating impact is important and valuable. HRCI members are invited to register for our Mastering Impact workshop on March 13th www.eventbrite.ie/e/hrci-membe...

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Reposted by Cassandra Dinius

Inside Higher Ed @insidehighered.com · 12/02/2025

Career Advice | No Research About Us Without Us Research labs benefit if faculty are inclusive of students with disabilities, a group of scholars and students committed to inclusive lab practices write. #HigherEd #EDUSky #AcademicSky bit.ly/3QeNAUt

bit.ly

How to include disabled students in research labs (opinion)

Research labs benefit if faculty are inclusive of students with disabilities, a group of scholars and students committed to inclusive lab practices write.

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Reposted by Cassandra Dinius

Rare Disease Clinical Trial Network @rarediseasectn.bsky.social · 14/01/2025

🌟 RARE DISEASE RESEARCH CONFERENCE 2025 🌟 📅 When: 10th April 2025 📍 Where: UCD O’Reilly Hall, Dublin, Ireland ✨ Free registration, all welcome! A huge thank you to our partners at HRB-TMRN for hosting registration. Register here: www.eventbrite.ie/e/rare-disea...

A slide that says 'Rare Disease Research Conference 2025, 10th April, O'Reilly Hall, UCD, building a better future for people living with rare diseases through learning, collaboration and innovation'

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Reposted by Cassandra Dinius

Mary Clare O'Hara @maryclareohara.bsky.social · 08/01/2025

HSE National Policy for Consent in Health & Social Care Research V2.0-addressing the age of consent for young people (16 & 17 years) is now available-It acknowledges their autonomy to participate in health & social care research Thanks to all involved 👏🏽 hseresearch.ie/consent/

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Reposted by Cassandra Dinius

University of Limerick @unioflimerick.bsky.social · 08/01/2025

"Social media has resulted in a shift in focus from health to aesthetics." UL's Dr Catherine Norton, explains why taking health advice from social media influencers over qualified dietitians could potentially be dangerous for your health www.rte.ie/brainstorm/2... #StudyatUL

Close up photograph of people in fitness gear scrolling on mobile phones

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Reposted by Cassandra Dinius

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

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