Author | Lightnews

Reposted by Ricky Chotai

Lupus Europe @lupuseurope.bsky.social · Jun 12

🚨 Do men with #lupus receive the support they need?

😃 Join us today at room C3, as @rickychotai.co.uk, Special Advisor to the Board & Co-leader of our Men's network, presents data from our Swiss Knife Survey on stigma, #depression & unmet needs of men living with #SLE.

#EULAR2025

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Reposted by Ricky Chotai

Lupus Europe @lupuseurope.bsky.social · May 27

🦋Lupus Europe’s 2024 Swiss Knife Survey is now published in Autoimmunity Reviews!

With 4525 responses from 36 countries, it’s a🔝step forward in understanding the real burden of SLE from the patient’s perspective.

https://f.mtr.cool/xrvljwnsvd

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Reposted by Ricky Chotai

Lupus Europe @lupuseurope.bsky.social · May 29

🌟 Being a finalist in the 2025 Made with Patients Awards is recognition of LupusGPT’s mission to empower the #lupus community with:

✅ Reliable, evidence-based information about lupus
✅ Free access
✅ Multilingual support to break language & literacy barriers

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Reposted by Ricky Chotai

Lupus Europe @lupuseurope.bsky.social · Apr 4

😃Our Board & Extended Board met last week for2️⃣exciting days of work on the strategic plan. Joined by NVLE to kick off the planning of our 2025 Convention, which will take place in the Netherlands!

👥Also hosted an engaging Industry Roundtable, with updates, workshops and more!

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Ricky Chotai @rickychotai.co.uk · Mar 27

Big news! 🎉 My abstract, “Living with lupus as a man – a major challenge to image of self”, has been selected for an Oral Presentation at #EULAR2025 in Barcelona! 💜 Grateful for @lupuseurope.bsky.social support & excited to share this important topic. #LupusAwareness #Rheumatology

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Ricky Chotai @rickychotai.co.uk · Mar 20

Off to Amsterdam for my first @LupusEurope board meeting !

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Ricky Chotai @rickychotai.co.uk · Mar 12

Amazing show loving sterling

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Reposted by Ricky Chotai

RAIRDA @rairda.bsky.social · Mar 12

@lupusuk.bsky.social is conducting a survey to understand what is important to you as someone living with lupus, or caring for someone with #lupus, and what you think the charity should be focusing on to better support your needs.
For more information, visit: www.lupusuk.org.uk/2025/03/04/survey

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Ricky Chotai @rickychotai.co.uk · Mar 4

UK healthcare pros & lupus researchers: Your input is crucial! 🏥🔬

Help @lupusuk.bsky.social shape support for lupus patients. Quick, anonymous survey closing May 1st, 4PM BST.

Your expertise can make a difference!

Survey link: bit.ly/Lupussurveyhcp

#Lupus #UKHealthcare #LupusResearch

The needs of the lupus community

Take this survey powered by surveymonkey.com. Create your own surveys for free.

bit.ly

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Ricky Chotai @rickychotai.co.uk · Feb 28

Today I think is very much a moment in history and sadly for the world it feels even more scary. The Ukrainian people have fought hard for their freedom and it is not up to Trump if and when they should compromise.

Ricky Chotai @rickychotai.co.uk · Feb 28

Wendy is an amazing advocate and campaigner for #lupus and volunteers significantly for @lupusuk.bsky.social. We the #lupus community are lucky to have her!

Fair Treatment for the Women of Wales (FTWW) @ftww.bsky.social · Feb 28

In 2021, thanks to tireless advocacy from our Volunteer Autoimmune Champion, Wendy Diment, alongside valued members of the FTWW community, we published our report, 'Making the Case for Better #Lupus and Rare Autoimmune Disease Provision for Patients in Wales' (ftww.org.uk/autoimmune/)

Autoimmune - FTWW

{:en}It is estimated that over 3,000 people in Wales have Lupus, and over 80% of Lupus patients and those living with other RAIRDs are female (or assigned female at birth). In addition, Lupus has a 3-...

ftww.org.uk

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Reposted by Ricky Chotai

University of Oxford @ox.ac.uk · Feb 28

Last night, the chapel facade of Magdalen College was lit up ahead of #RareDiseaseDay.

A disease is classed as rare when it affects fewer than 1 in 2000 people and there are over 3.5 million people living with a rare condition in the UK alone.

📷 | @oxfordpaediatrics.bsky.social

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Ricky Chotai @rickychotai.co.uk · Feb 28

Thanks for sharing #lupus

Ola Ojewumi @olastruth.bsky.social · Feb 27

#BlackHistoryMonth What do R&B singers Toni Braxton and Muni Long have in common? They have lupus and have spoken about how chronic illness has affected their music careers as Grammy winners.

#BlackSky #DisabilitySky #Lupus #ChronicIllness #BlackMusic #BlackMusicHistory #BlackHistory #LupusWarrior

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Ricky Chotai @rickychotai.co.uk · Feb 27

✨ *Breaking News!* ✨ The latest issue of *New Scientist* highlights amazing progress in autoimmune disease research (lupus, rheumatoid arthritis, Type 1 diabetes). Hope is on the horizon! 💜
Read about CAR-T cell therapy for lupus via @lupusuk.bsky.social : lupusuk.org.uk/2024/11/08/c...

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Ricky Chotai @rickychotai.co.uk · Feb 22

Just wrapped up our virtual trustee board meeting at @lupusuk.bsky.social 📊💻! Exciting plans ahead for our 35th year 🎉 and a fresh strategy on the horizon 🚀. Let's make it a year to remember! 💜 Follow @lupusuk.bsky.social for more updates 📱 #LupusUK #Lupus

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Ricky Chotai @rickychotai.co.uk · Feb 17

Wrapped up my final onboarding meeting with @lupuseurope.bsky.social today! Excited to dive into impactful projects for the European Lupus Community, including exploring the intersection of #sex and #lupus. Thrilled to work alongside such an inspiring team!

a cat is dancing in front of a mirror with its paws up

ALT: a cat is dancing in front of a mirror with its paws up

media.tenor.com

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Ricky Chotai @rickychotai.co.uk · Feb 17

a cat is standing on top of a bed looking at the camera .

ALT: a cat is standing on top of a bed looking at the camera .

media.tenor.com

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Reposted by Ricky Chotai

Lupus Europe @lupuseurope.bsky.social · Feb 17

🦋 Lupus Europe, Prof Arnaud, and Dr @go-daniel.bsky.social are thrilled to unveil LUPUS-ALERT!

🌍 A groundbreaking global project to transform SLE care: 𝐋𝐔𝐏𝐔𝐒 erythematosus glob𝑨L cont𝐄xt sc𝐑eening 𝐓ool.

Thank you to all the Doctors & patients driving this key project forward!

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Ricky Chotai @rickychotai.co.uk · Feb 5

I have not seen this sort of innovation in the Health Charities or non profits.

Great to see AI being used to improve the patient experience. #lupus #ai #innovation

Lupus Europe @lupuseurope.bsky.social · Feb 5

🦋 Living with #lupus can be tricky, especially when searching for high-quality, reliable information.

😵‍💫 Feeling overwhelmed? Discover #LupusGPT! Our AI tool offers a world of doctor/patient-validated knowledge.

🤩Available in most languages!

Visit https://lupusgpt.org/ now

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Ricky Chotai @rickychotai.co.uk · Feb 5

Ooo welcome to Bluesky @lupuseurope.bsky.social if you are interested in #Lupus things check them out. If you are UK based check out @lupusuk.bsky.social

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Ricky Chotai @rickychotai.co.uk · Feb 3

I'm Ricky, based in Manchester. Living with #Lupus and doing some volunteer work with two brilliant organisations - @lupusuk.bsky.social and Lupus Europe.

When I'm not going on about #lupus, you'll probably see me posting about #LoveSUs and #realitytv.

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Ricky Chotai @rickychotai.co.uk · Feb 3

An excellent meeting with the #LupusEurope team.

So many exciting projects going on. Looking forward to the next few months. #Lupus

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Ricky Chotai @rickychotai.co.uk · Feb 3

Stark facts about health care inequality for lupus patients in the UK. @lupusuk.bsky.social #lupus

Dalila @dalilatm.bsky.social · Feb 2

#UK #lupus "Black people in England eight times more likely to be hospitalised with lupus

Exclusive: Experts say ‘stark’ inequality with white people could be a result of delayed diagnoses"
www.theguardian.com/society/2025...

Black people in England eight times more likely to be hospitalised with lupus

Exclusive: Experts say ‘stark’ inequality with white people could be a result of delayed diagnoses

www.theguardian.com

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Ricky Chotai @rickychotai.co.uk · Jan 15

The team at the charity are amazing as well as so many volunteers!

Ricky Chotai @rickychotai.co.uk · Jan 14

A bit more of my story is here and I volunteer for Lupus UK. lupusuk.org.uk/trustees/

Trustees of LUPUS UK | Lupus UK

lupusuk.org.uk