Dalila (@dalilatm) header
Dalila (@dalilatm) profile picture

Dalila

@dalilatm

Interested in research ethics and all about #lupus | Running support group | Views my own | We need a cure for Lupus 🦋 Follow @PReSLupusWP

 Wales, United Kingdom
Joined January 2011
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Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)Photo by Dalila (@dalilatm)
🤩 Since our 1st meeting in 2019, time has flown by! Fast forward to today’s meeting with 2️⃣ wonderful guest speakers helping us understand roles & holistic care in #lupus @mel_chieza 🙌 Thanks everyone who has joined us on this journey & shared the many faces of lupus! #Cardiff
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Lupus UK (@LUPUSUK) profile pictureLupus UK@LUPUSUK8 Mar 2019
We're very pleased to announced the first meeting of our new Cardiff Lupus Support Group on 30th March 2019! We hope to meet lots of you there. #Cardiff #Lupus @WalesOnline @cardiffcouncil @CV_UHB @CAVOGCHC
Image from Lupus UK (@LUPUSUK)
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It was a pleasure to speak @birdbathcharity on #Raynauds particularly at this time of year when people with Raynauds will be struggling with symptoms. Interested? Give it a listen👇🎧 @WeAreSRUK @raynaudsorg @Raynauds_UK @scleroderma Research studies posted below ⬇️
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Dalila retweeted
nature (@Nature) profile picture
nature
@Nature13 Dec 2024
The skin — once thought to be a mainly passive barrier — can produce its own antibodies that fight off infections nature.com/articles/d41586-0…
The skin’s ‘surprise’ power: it has its very own immune system

The skin’s ‘surprise’ power: it has its very own immune system

Nature - The finding could lead to the development of needle-free vaccines.

nature.com
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Positive step forward to see #Lupus mentioned in the first #Wales Women’s Health Plan. The complexity of this disease and the resulting health inequalities make advances like this key for those living with lupus. ➡️On to the next steps! 🔗executive.nhs.wales/function…
Image from Dalila (@dalilatm)
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It was great to hear @AlisonEBennett share the story of one of her constituents who lives with multiple RAIRDs in Parliament today #RAIRDaware
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We are conducting a study looking at how AI should be implemented in healthcare in Wales. 🖥️ If you live in Wales or work as a healthcare professional in Wales, then we want to hear from you. cedar.nhs.wales/images/study… @Valuein_Health @DHCWales @BCS_South_Wales @lshubwales – at Wales, United Kingdom
Image from CEDAR (@CEDAR_Cardiff)
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Women's health hubs for 'every part of Wales' bbc.in/4iqNW7m
Women's health hubs all over Wales by 2026, says Welsh government

Women's health hubs all over Wales by 2026, says Welsh government

Women's health hubs will be set up in every part of Wales to try to close the gender health gap.

bbc.com
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🦋 Important #Lupus debate in Westminster Hall - Tues 10th Dec, 9:30am!Jim Shannon MP is raising rare autoimmune rheumatic diseases. This is our chance to be heard!📝 Want your MP to attend?bit.ly/lupus-template .Let's make our voices count! 💜#LupusAwareness #RareDisease
Subject: Please Attend Westminster Hall Debate on Lupus - 10th December

Subject: Please Attend Westminster Hall Debate on Lupus - 10th December

Subject: Please Attend Westminster Hall Debate on Lupus - 10th December Dear [MP's name], I am writing as your constituent to request your attendance at the Westminster Hall debate on rare autoimmune...

docs.google.com
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Detection of subtle changes #eyetest and powerful sourcing- this sounds very promising, especially if gets to #lupus and leads to damage prevention and early detection 🙏
INSIGHTeyehub (@INSIGHTeyehub) profile pictureINSIGHTeyehub@INSIGHTeyehub25 Nov 2024
In the latest @BBCClick episode, @LaraLewington reports from @Moorfields and @UCLeye on how INSIGHT's large-scale datasets are enabling #Oculomics - the science of using the eye as a window to the body. With @pearsekeane and @sktywagner #ophthalmology bit.ly/Click_Oculomics
Dr Siegfried Wagner, senior research fellow at Moorfields, looks off camera at an OCT image, while Lara Lewington looks on.

ALT Dr Siegfried Wagner, senior research fellow at Moorfields, looks off camera at an OCT image, while Lara Lewington looks on.

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From my #lupus experience, having access to a brand of hydroxychloroquine that you can tolerate is a key issue here too "Rheumatology patients seriously impacted by drug shortages, BSR warns" @limbicrheumUK @RheumatologyUK thelimbic.com/uk/rheumatolog…
Rheumatology patients seriously impacted by drug shortages, BSR warns

Rheumatology patients seriously impacted by drug shortages, BSR warns

Thousands of rheumatology patients have been impacted by drug shortages in 2024, with some even ending up in hospital as their condition deteriorated, the British Society for Rheumatology (BSR) has...

thelimbus.co.uk
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What is the impact of social connections on lupus? Abstract #1503: In an NYC SLE cohort, greater social integration and support correlated with less pain, depression, disability, and frailty, while loneliness was linked to worse outcomes. @RheumNow #ACR24 #SDoH
Image from Akhil Sood MD, MS (@AkhilSoodMD)
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Really important research on shared decision making in rheumatology! Many patients still don’t feel it’s a two way conversation @chroniceileen @ACRheum #acr24
Image from Emma whammy (@EchoDale9066)
Image from Emma whammy (@EchoDale9066)
Image from Emma whammy (@EchoDale9066)
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🚨 @ACRheum's new summary guideline for screening, treating & managing #lupusnephritis (lupus-related #kidneydisease) offers evidence-based recommendations to help adults & children w/ #lupus receive the most effective care. Read more on our blog: buff.ly/4fDsoTd #ACR24
Image from Lupus Foundation of America (@LupusOrg)
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Join #Mumpredict dissemination event 📣updates on research findings 🤰#MultipleLongTermConditions in #pregnancy 🖥️online event 🗓️26 Feb 2025 🕙1000am to 1530pm (GMT) 👉register eventbrite.com/e/mum-predict…
Image from Ing Lee (@IngLee17)
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💡Informative! Great learning from Prof. Valerie Sparks about the latest arthritis research at the Biomechanics and Bioengineering Research Centre VA @cardiffuni 💻🧬🤝using AI, genetics & virtual reality. Patient advisory reps have played a key role in shaping research🌟
Image from Dalila (@dalilatm)
Arthritis UK Cymru (@CymruArthritis) profile pictureArthritis UK Cymru@CymruArthritis11 Nov 2024
💙 Thank you to everyone who joined our Arthritis Engagement Events—and an extra shoutout to Prof. Valerie Sparkes for her inspiring talks! 💙 We explored ground-breaking research on arthritis treatments, infection prevention, and back pain relief.
Image from Arthritis UK Cymru (@CymruArthritis)
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✅Are you healthy? ✅Do you have autoimmune or rheumatic disease? ✅Are you over 18 yrs old? ✅Do you have 15 min? If you fulfil any of the above, please fill in this anonymous survey to help improve lives of people living with chronic diseases, thanks 👉🏽surveymonkey.com/r/TV6JF75
Image from Dr Ai Lyn Tan (@DrAiLynTan)
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⏳ Time is running out! Have groundbreaking research on pediatric SLE? Share it at #LUPUS2025 to drive advancements in the diagnosis, care, and treatment for young patients. Submission deadline: November 5: bit.ly/4hlfaf7 Let’s shape the future of pediatric #lupus care!
Image from Lupus 2025 (@LupusCongress)
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Have your say on our Discover Your Role 2.0 action plan Help us overcome barriers to public involvement in research by providing your feedback to ensure the plan’s goals are clear. View the draft and share your thoughts by 13 Jan, 2025. healthandcareresearchwales.o… @FTWW_Wales
Image from Health and Care Research Wales (@ResearchWales)
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‘Exciting’ new lupus treatment could end need for lifelong medication theguardian.com/science/2024…
‘Exciting’ new lupus treatment could end need for lifelong medication

‘Exciting’ new lupus treatment could end need for lifelong medication

CAR T-cell genetic therapy, typically used in cancer patients, could lead to cure for the disease, says expert

theguardian.com
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OMERACT SLE Working Group Core Outcome Set (COS) Development Steps!📋 Check out the stages of SLE COS development & follow us to track our progress on the OMERACT SLE COS.
Image from OMERACT-SLE (@OMERACT_SLE)
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💡Interest sessions today at #WelshConfed24- Insights into current health & care priorities with @Jeremy_Miles. Plus, session with @ResearchWales featuring 4 experts, offering different views & practical perspectives from the research field #Wales #Cardiff
Image from Dalila (@dalilatm)
Image from Dalila (@dalilatm)
Image from Dalila (@dalilatm)
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