Patient organisation for primary sclerosing cholangitis. Info and support for patients | the PSC App | research towards a cure. #LetsBeatPSC #LetsBeatPSC
Joined January 2011
- Tweets 8,787
- Following 1,452
- Followers 2,876
- Likes 8,197
2,141 Photos and videos
Pinned Tweet
16 Apr 2024
PSC Research progress is too slow. We need to do more, faster because people with PSC don't have the luxury of time. By 2030, we will fund and support PSC research offering over £1 million in grants to researchers. Consider making a donation buff.ly/4cPoPs2 #Mission2030
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The ICHOM is finalising a global set of Patient-Centred Outcome Measures for Liver Disease. Your voice will directly influence the recommendations prior to their global launch.
🔗 buff.ly/nbBIzUZ
Any questions? Contact Umanga de Silva at u.desilva@ichom.org.
#LetsBeatPSC
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Jun 13
Looking for your next big running milestone? We have places for #BathHalf Marathon, one of the UK’s most iconic, fast, and flat city-centre courses.
General entries sell out fast, but you can lock in your place today.
➡️buff.ly/UfVpnxT
#TeamPSCSupport #LetsBeatPSC
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Jun 12
Busy week for Mark! Yesterday he spoke at King's College Hospital, today he's speaking to the EASL PSC School in Hamburg to inspire new research & highlight the burden of PSC symptoms. As a small charity, we're making every penny count by joining online! buff.ly/DowUVeh
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Jun 11
Today PSC Support is delighted to join our long-standing colleagues @KingsCollegeNHS Hospital to celebrate a significant milestone: 60 years of world-leading liver science. Mark's joining a panel discussion to reflect on decades of progress. #LetsBeatPSC #LiverDisease #Kings60th
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Jun 10
Have you had an #organtransplant? A new research study exploring employment after transplantation and is recruiting participants now.
Interested in taking part? Contact Sarah Dickson:
📧 s.r.dickson1@newcastle.ac.uk
📞 07407 794162
#LetsBeatPSC #Transplantation #ResearchStudy
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Jun 9
Really important and exciting news about Volixibat as a treatment for cholestatic pruritus (PSC itch). Thank you to Dr Joshi for this quick video explaining things in a bit more detail. More ➡️ pscsupport.org.uk/volixibat-…
#LetsBeatPSC #PSCItch #primarysclerosingcholangitis @EASLnews
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Jun 8
It’s here! Our Big Give #SmallCharityWeek video, featuring 8 voices from the PSC community. We're just 2 weeks away from launch! Help us hit our £20k research goal:
📢 SHARE this video
💰 PLEDGE a donation promise (it gets doubled!)
buff.ly/GJApWNi #LetsBeatPSC
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Jun 7
A fitting motto from Dr Joshi to close out #VolunteersWeek.
From joining us at Ask the Expert sessions and Information Days to running London Marathon, Dr Joshi goes above and beyond for the PSC community.
Thank you for sharing your time, energy, and expertise. #LetsBeatPSC
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Jun 6
Good luck to James at the Blenheim Triathlon, sporting his shiny new goggles! Today is also #WorldTransplantDay, making this challenge extra special as James is a liver transplant recipient. buff.ly/LoPUABu #LetsBeatPSC #BlenheimTriathlon #OrganDonation #PSCSupport
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Jun 5
Thank you to Lorraine, one of our incredible Facebook moderators! 💙
For nearly 14 years, Lorraine has been a reassuring voice in our community, helping our online support group grow from just 200 members to over 5,000. #LetsBeatPSC #VolunteersWeek #PSCSupport #ThankYou
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Jun 5
After her son Jonathan’s diagnosis, she experienced first-hand how essential accurate information and a safe spaces are. Since then, she has dedicated her time to ensuring no one has to face PSC alone.
#LetsBeatPSC
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Jun 3
Staying positive is easier said than done. One of our supporters shared this quote while speaking about her journey at one of our Info Days. It brings her comfort, we hope it does the same for you.
Our info & support support services are here for you 🔗 buff.ly/SFQL7j6
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Jun 2
It takes a village 💙 THANK YOU to our 80 volunteers giving their time to the PSC community in so many different ways. Volunteers are involved and contribute to all aspects of our work. Learn more ➡️ buff.ly/uKmawwH
#VolunteersWeek2026 #PSCSupport #LetsBeatPSC
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Jun 1
What’s the latest in global PSC research? 🧬 Join our live webinar with Prof Palak Trivedi as he breaks down the highlights from the EASL Congress into insights for future treatments and patient care. Includes a live Q&A!
🗓️ Thu 25 June
🎟️ Register free: buff.ly/NBGG56c
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May 31
Good luck to Elliot, who is taking part in the Great Manchester Run this Sunday alongside his dad, Tony, and his brother-in-law, Neil, to raise vital funds for PSC Support. It’s a cause close to their hearts, as Elliot’s partner, Kelly, lives with PSC. buff.ly/hCFXika
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May 30
We love a good action shot! 🤩 Check out Maria leaping for joy after #ParisMarathon last month. We have charity places in over 900 events across the UK (and a few in Europe too!). Email at fundraising@pscsupport.org.uk for a chat so we can help. #LetsBeatPSC #PSCSupport
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May 29
From denial at diagnosis to an absolute powerhouse for our community - Carol is an inspiration. She raised £9.6k running a marathon & later led our #20KYourWay challenge which raised over £25k! Her advice? "Life is for living."
Want to share your story? 📩 hello@pscsupport.org.uk
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May 28
5 runners. 26.2 miles. Over £26,000 raised! 🏃♂️🎉
A HUGE thank you to our London Marathon 2026 team & the Loizias Foundation for providing £5k in match funding for Dr Joshi (whose face hurt from smiling so much!).
Inspired? Apply for a 2027 place today: buff.ly/g9Fxjs4
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May 27
We’ve arrived! 🇪🇸 Martine & Mark are officially in Barcelona for the @EASLnews Congress. The PSC Support stall is set up & they've already started meeting with international patient organizations to unite our voice. Stay tuned for updates. #EASL2026 #LetsBeatPSC #PatientAdvocacy
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May 26
Talk about couples goals! Huge shoutout to Abbie, who recently braved the shave for PSC Support. The best part? She now has matching haircuts with her partner Miguel and the amazing friend who took on the challenge with her!
Before & after pics 👇 #LetsBeatPSC #BraveTheShave
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