An unusual end to an excellent @ukkidney.org #UKKW26….sadly no flight home tonight or tomorrow from Leeds so fingers crossed we make it Leeds->Manchester and get home that way tomorrow evening! Hope everyone else travelled safely home. #RenalResearchNI #RareDiseaseNI @claire-hill.bsky.social

My amazing friend Prof AJ McKnight closing a wonderful #RareDiseaseNI conference for patients, carers, families, professionals, researchers, policymakers, here at the beautiful Ebrington Hotel in #DerryLondonderry #RareDisease #Research

Looking forward to it!
Show your kidneys some love ❤️
#RenalResearchNI
#RareDiseaseNI

LifeArc rare kidney disease logo

Teamwork! En route to our @lifearc.bsky.social @kidneyresearchuk.org rare #kidney disease meeting in Solihull today, supported locally by the Northern Ireland Kidney Research Fund #RenalResearchNI #RareDiseaseNI

RD IMAG logo

Sharing progress and strategic planning at our #RareDisease UK Mirror and Action Group for @erdera.bsky.social yesterday. Excellent conversations in Leeds! #RareDiseaseNI.

Early 2016 in #RareDiseaseNI

Developing QS for rare disease across the rare disease community Developing quality statements for rare disease via consensus across the rare disease community.

Delighted to have contributed to developing UK #RareDisease quality standards within our 4-nation project led by Sue Farrington rarediseaseqs.org

-> draft quality standard for consultation 6-20 Jan 2026 Have your voice heard! #RareDiseaseNI - please add your perspectives on what matters most!

Claire presenting ageing biomarkers

Grace presenting building diagnostic equity and trial readiness for clinical neuromuscular trials.

Thanks to @claire-hill.bsky.social & Dr Grace McMacken showcasing their research in our @qubelfastofficial.bsky.social Molecular Epidemiology & Public Health team-packed RVH room today. #Ageing #RareDiseaseNI #RareDisease #ClinicalTrials #RenalResearchNI #RARDTAC #Neuromuscular #kidney.

Home | Caring with Rare A safe space for carers and families affected by rare conditions. Find stories, guidance, and tools to support your caring journey.

Exciting #RareDiseaseNI launching our @ukri.org funded, co-developed online resource empowering unpaid carers supporting their loved ones with a rare disease. By carers, for carers - thank you caringwithrare.org #RareDisease #carer #caregiving

Department publishes 2024-25 Progress Report on the Northern Ireland Rare Diseases Action Plan Health Minister Mike Nesbitt has welcomed publication of the third progress report on the Northern Ireland Rare Diseases Action Plan.

NI 2024-25 Progress Report for Rare Diseases Action Plan, highlighting our @lifearc.bsky.social Centre for acceleration of RD trials & doctoral training program in #RareDisease building capacity, skills and accelerating access to medicines. #RareDiseaseNI www.health-ni.gov.uk/news/departm...

Sam presenting caring with rare poster

Raresummit 25 opening slide pic

AJ, Sam and DJ in Hinxton Hall pic

Happy sunshine smile sticker

It’s certainly a very busy time for #RareDiseaseNI. Good to connect with colleagues and meet new friends at today’s #CamRARE25. Excellent event hosted by @camrare.bsky.social as always. Thanks for the opportunity to participate :) safe home everyone #RareDisease

Picture of panel leads: transforming science into healthcare

Productive discussions with my co-chairs of the Clinical implementation and data enhancement research community last week @genomicsengland.bsky.social #RareDisease #RareDiseaseNI

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Cake picture

Delighted to have launched activities within our #RareDisease clinical and academic research network yesterday. Excellent conversations & cake! Thanks all who contributed - formal pics and report to follow! @qubelfastofficial.bsky.social #RenalResearchNI #RareDiseaseNI #RARDTAC

NILAB pic

Delighted to have our in-person launch for yr 1 of our @ukri.org NILAB doctoral training program. @qubelfastofficial.bsky.social @ulsteruni.bsky.social students and faculty gathering today :) #ArtificialIntelligence #BigData #DataScience #HealthyAgeing #RareDiseaseNI #RenalResearchNI

Job profile

Interested in #RareDisease; therapies for #orphan conditions; #HealthEconomics? #Job with Prof McCabe and #RareDiseaseNI @qubelfastofficial.bsky.social working with our @lifearc.bsky.social Centre for Acceleration of Rare Disease Trials team. Closes 29/09/2025 hrwebapp.qub.ac.uk/tlive_webrec...

Beautiful start to the day for @ishg.ie #Genetics conference today. #RareDiseaseNI

AJ and Sam picture

AJ & Sam at Hillsborough gates picture

Honoured to have attended the Royal Hillsborough Garden Party this week. #RareDiseaseNI @QUB @RAiNAllIreland #RARDTAC #RareDisease gaining recognition!

Rare disease logo

New #Job opportunity with our #RareDiseaseNI team. Experience communicating with stakeholders? Enjoy using multimedia tools? Want to support our local rare disease community? Apply by 8th Sept!

#job 18.5 hr/wk closes 25th Aug. Help us map & improve how people affected by #RareDisease engage in clinical #research locally and internationally. Join #RareDiseaseNI at #LoveQUB. @qubelfastofficial.bsky.social

LifeArc and Genetic Alliance UK launch a new report calling for the acceleration of research and development (R&D) for rare diseases   - LifeArc LifeArc and Genetic Alliance UK have launched a report calling for the UK Government, NHS, researchers, industry, patient groups and policymakers to work together to transform the lives of more than 3...

LifeArc recommendations to accelerate #RareDisease research. Strategic long-term investment required with commitment across the devolved UK nations for action and funding to ensure deliverables are met. #RareDiseaseNI #RareConditions #ChangeTheRareFuture #Research. www.lifearc.org/2025/lifearc...

nILAB logo

So in Biosciences

Looking forward to today’s stakeholder & expert discussions #AI #health #OneHealth #genomics #bioscience #multiomics #LoveQUB Our first PhD students on this @ukri.org award start Oct 2025. #ExcitingTimes @qubelfastofficial.bsky.social @ulsteruni.bsky.social #ageing #RenalResearchNI #RareDiseaseNI