PSC Support

Managing a chronic condition like PSC at work can be challenging. It’s important to understand your rights and your employer's responsibilities. Learn more by watching (or rewatching) our Ask the Expert session with our HR Trustee, Charlene Oke, who has over 15 years experience across several industries. ➡️ https://buff.ly/40mO1Tb #LetsBeatPSC #ChronicConditions #RareDiseases #WorkersRights #EqualityAct

When we say we are a patient led organisation we really mean it. Carol has been involved with PSC Support for several years. Initially she found us to help navigate her own health journey as someone with PSC. Later she became one of our fundraisers, completing Manchester Marathon and initiating our PSC Support #20KYourWay challenge. Most recently she represented patient voices as a guest speaker at our Information Day in Birmingham. "I had a wonderful time at the PSC Information Day in Birmingham on Saturday. I learnt so much and truly appreciated the opportunity to share my journey as a PSC patient with so many of you to. Thank you to the PSC Support team for letting me play a small part in the day." Join us in thanking Carol for her ongoing support and learn more about her experience starting a family as someone with a PSC diagnosis. https://buff.ly/3YwT4in #LetsBeatPSC #PSCJourney

📢 Exciting News! Paula Hanford, PSC Support CEO, is the new Chair of the UK Liver Patient Alliance 🎉 This new role means Paula is now representing patients on the UK Liver Alliance, a coalition of more than 30 organisations committed to improving liver health and tackling liver disease. With a focus on research, prevention, and patient care, the Alliance works collaboratively to make a real difference for those affected by liver conditions. #UKLiverAlliance #LiverHealth #PSCSupport

🏃♂️ We're thrilled to have Nicholas Antolik representing #TeamPSCSupport at the TCS London Marathon 2025! As a young person living with primary sclerosing cholangitis (PSC), a rare immune-mediated liver disease, Nick tell us that he celebrates small daily victories — appreciating every day, staying fit, and maintaining a fulfilling career. The London Marathon will be a major challenge, but Nick is committed to raising awareness for PSC and inspiring hope for others facing this condition. Join us in cheering him on! ➡ https://lnkd.in/eh5uK3_6 #PSCSupport #LondonMarathon #LetsBeatPSC

This week Paula, Mark, and Loren from PSC Support are attending the THE BRITISH ASSOCIATION FOR THE STUDY OF THE LIVER Annual Conference. This event is an opportunity to connect with colleagues from across the specialty, exchange ideas, and hear about the latest advances in hepatology. We’re also thrilled to share that Loren, our Helpline nurse, has been invited to speak at the conference, sharing her expertise as a hepatology clinical nurse specialist with a focus on autoimmune diseases 👏 #PSCSupport #BASL2024 #Hepatology #AutoimmuneDiseases #LetsBeatPSC

Tickets are going fast for our upcoming Information Day - register now to avoid disappointment. We're also pleased to share details for our sessions focused on The Mind, when we'll be discussing mental and physical wellbeing for those affected by PSC. ➡️ https://buff.ly/4eDID28 We hope to see you there! #PSCSupport #InformationDay #MentalWellbeing #ChronicIllness #LetsBeatPSC

The talented Kieran Metcalfe Photography has been selling his stunning calendars since 2018 to raise funds for PSC Support. He has done this while running his own business and managing his PSC. We are truly grateful for this ongoing effort and we can confidently say that this year’s calendar is just as beautiful as the ones that came before! Available in A3 'portrait' for £14.99 or A4 'landscape' for £8.99, proceeds from every sale go directly to supporting the PSC community. Grab one for yourself or as a gift and help raise vital funds and awareness.  ➡ https://lnkd.in/e9YYFPh7 #LetsBeatPSC

As the leading patient-led organisation for those with PSC, we understand the importance and value of patient perspectives. In last month’s Ask the Expert session, rather than featuring doctors, nurses, or physiotherapists, we brought you three PSC veterans—William, Maria, and Mark—who shared their personal experiences with clinical trials. Their insights will help you better understand what participating in a clinical trial involves. If you've ever considered joining a clinical trial for PSC, this is a must-watch video. You can find the full video on the PSCSupportOnline YouTube channel ➡️ https://buff.ly/4eoYUYz #LetsBeatPSC

Last week Paula Hanford, PSC Support's CEO, met with some of our international PSC partners to discuss plans for next months Global PSC Awareness Day. Together we are stronger! 🌍 💪 #PSCAwarenss #PSCAware #PSC #LetsBeatPSC #PSCAwarenessDay | European Liver Patients' Association - ELPA | PSC PARTNERS SEEKING A CURE

It's #WorldPatientSafetyDay! This year's theme is all about improving diagnosis for patient safety with the powerful message "Get it right, make it safe!" For those affected by rare diseases like PSC, early and accurate diagnosis is crucial. At PSC Support, we are committed to advancing the future of diagnosis for PSC and improving the safety and lives of those affected by this complex liver disease. That's why we're proud to be funding Dr. Simon Rushbrook's ground-breaking research to develop a blood test for diagnosing PSC. This research has the potential to transform how quickly and accurately people with PSC can be diagnosed, helping patients receive the right care at the right time. Join us today in raising awareness of the vital role of correct and timely diagnosis in keeping patients safe. Together, we can make a difference! 💙 #GetItRightMakeItSafe #PatientSafety #PSCSupport #ResearchForPSC #RareDiseaseAwareness #ImprovingDiagnosis #LiverDiseaseResearch #PSCResearch #PatientCare #WorldPatientSafetyDay2024