@PSCPartnersCa profile picture
PSC Partners Canada @PSCPartnersCa

Mission: to drive research to identify treatments and a cure for PSC, while providing education and support for those impacted by this rare disease.

Joined January 2017
  • Tweets 755
  • Following 228
  • Followers 641
131 Photos and videos
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PSC Partners Canada@PSCPartnersCa
1 Mar 2022
Support & Community available for those affected by #PSC in two @PSCPartners Facebook Groups! Find out more at bit.ly/OpenSupportGroup bit.ly/ClosedSupportGroup Join the conversation and welcome to the best family we wish you didn't need.
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PSC Partners Canada retweeted
Jesus Bañales@JesusMBanales
19 Oct 2024
20 Years International Research Experience in PSC: What Have We Learn? 👉International Collaborations matters & make the difference @ipscsg @CcaEns 👉Patient Associations play a central role @PSCPartners @PSCSupportUK @tomhemmingk at the stage, who better than him! 👏
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PSC Partners Canada retweeted
biohub
@biohub
17 Oct 2024
Community-driven research is critical to advance scientific discovery Science in Society meeting attendees share posters on their work to push for treatments or cures in their rare disease areas, emphasizing the critical role that patients & communities play in driving discovery
Person standing in front of poster smiling

ALT Person standing in front of poster smiling

Person standing in front of poster smiling

ALT Person standing in front of poster smiling

Person standing in front of poster smiling

ALT Person standing in front of poster smiling

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Last call to register: Sat Paeds PSC Day webinar for patients & families w amazing expert speakers Gideon Hirschfield, @amandaricciuto, @MacparlandSonya, @garybader1, Sarah Kohut, Amrita Mundh, & Albert Fung fr @UHN @UofTGastroH @SickKidsNews @TVASurg bit.ly/PSCPC24
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PSC Partners Canada retweeted
PSC Support@PSCSupportUK
14 May 2024
People with #PSC can experience an infection of the bile ducts (called “PSC flare” or “cholangitis attack”). If you're a PSC patient who's had an attack or flare consider filling in this survey, helping us improve care and develop treatments. buff.ly/3Ut2DeQ @PSCPartners
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Help us reach paediatric PSC families w news of Canadian Paediatric PSC Day on June 1 @ Toronto. Full day educational programming & peer support. Register @ bit.ly/regPSC @CASLupdates @amandaricciuto @MacparlandSonya @BinitaKamath @DrSimonLing @AASLDtweets @NASPGHAN
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Patients & families: Today & Tomorrow: Event for paeds autoimmune liver @ Center for Autoimmune Liver Disease at Cincinnati Children's Hospital & ALiNK. Reg open through noon tomorrow for online attendance. 1.Register: web.cvent.com/.../abe1bfce-6…... 2: instructions to join online
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PSC Partners Canada retweeted
Trillium Gift of Life Network (Ontario Health)@TrilliumGift
7 Apr 2024
Tonight, the @TourCNTower will be lit green to kick off National Organ and Tissue Donation Awareness Week (#NOTDAW). Remember to check that you’re a registered organ and tissue donor at BeADonor.ca
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Stephanie Azzarello is 39, she lives in Toronto and works at the University of Toronto in the art history department as a researcher and lecturer. She also has PSC and is on the transplant wait list hoping to find a living donor. Read her full story here: theglobeandmail.com/amp/life…

My liver is turning to stone. I need a living donor, and soon

Liver disease has given me time and space to slow down, take a rigorous personal inventory and it has shown me a path of service

theglobeandmail.com
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2024 Canadian Paediatric PSC Day for patient families! Registration is open for this June 1 event to be held in Toronto, Ontario. Full information at conta.cc/3TAZFEH @PSCPartners #PSCAware
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PSC Partners Canada is happy to announce that registration is NOW OPEN for the first Canadian Paediatric PSC Day happening June 1 at the Arts and Letters Club in Toronto. Register here 👇 eventbrite.ca/e/canadian-pae… @PSCPartners #PaediatricPSCday #pscaware

Canadian Paediatric PSC Day

Join us for a day of learning & support for families living with paediatric PSC. In-person registration has closed. Join us online!

eventbrite.ca
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Save the date for the first ever Canadian Paediatric #PSC Day on June 1st at the Arts & Letters club in Toronto, Ontario, Canada! Registration will open in March and travelships will be available on a first come first serve basis. Stay tuned for updates! #pscaware @pscpartners
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Calling all Canadian #PSCers and family members of a #PSCer who transitioned to adult care during the past few years. Please join this virtual town hall on Feb 8! #PSCAware
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This cost-free research program is open to #PSC'ers in Canada and US! Check it out!
EMPOWER Program@program_empower
11 Jan 2024
🎉 New Year, New You! 🌟 Kick off 2024 with our 12-week Online Wellness Program tailored for adults managing chronic conditions. 💪💙 Empower your journey with wellness, mind-body connection, & a supportive community. Click empower-program.com
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PSC Partners Canada retweeted
Sonya MacParland@MacparlandSonya
9 Jan 2024
Rare liver disease research made possible through teamwork, collaboration, open science with the patient experience and voice at the heart of the whole process. uhn.ca/corporate/news/pages/…

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Teamwork Science! New publication with insights on what is going on at a cellular level in #PSC. So grateful for this team and the CIHR funding making this type of discovery possible! @PSCPartners
Sonya MacParland@MacparlandSonya
9 Jan 2024
Thrilled to share our team's newest paper examining the cellular ecosystem of Primary Sclerosing Cholangitis, a rare liver disease that has no current treatments, a fact that we hope to change with our single cell, single nuc and spatial atlasing efforts! sciencedirect.com/science/ar…
#scRNA-seq #spatial transcriptomics

ALT #scRNA-seq #spatial transcriptomics
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Patients, families, clinicians, & scientists gathered for #PSC @PSCPartners What the Cell?! Toronto event. Videos at bit.ly/YouTubePSCPC News release at go.pspcartners.org/WhatTheCe… @MbD_UofT @UHNTransplant @MacparlandSonya @amandaricciuto @DianaNakib @garybader1 @AutoImmuneLiver

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The Quality of Life in PSC conversation w liver experts from Australia, Belgium, and UK for this global #pscaware day.
European Liver Patients' Association
@EuropeLiver
29 Oct 2023
Extraordinary ELPA High-Level Roundtable Discussion on this #GlobalPSCDay Unlock the Secrets of PSC Symptoms, Treatment & Life with Leaders like Sindee Weinbaum, Mary Pressley Vyas, Prof. Dr. Doug Thorburn, Dr. Kate Lynch, and Prof. Dr. Thomas Vanwolleghem youtu.be/CYLpF-HAkAk
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PSC Partners Canada retweeted
European Liver Patients' Association
@EuropeLiver
28 Oct 2023
Primary Sclerosing Cholangitis (PSC): A #RareLiverDisease That Needs Our Attention! Do you know what PSC is? It's a rare condition that affects the bile ducts, causing scarring and narrowing. This can lead to liver damage and impact digestion. #LiverCancerAwarenessMonth #PSCDay
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It is not too late to join us for the online Canadian PSC patient event! 9am - 4pm EST tomorrow, 10am - 1pm EST Sunday. pscpartners.ca/events to register. #PSCAware @PSCPartners
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Virtual edition just added! Join us! #PSCAware @PSCPartners @PSCSupportUK @EuropeLiver @pscsupportau Registration required bit.ly/WTCDay1 @UHNTransplant @czi @MbD_UofT @mirumpharma @EscientP @MacparlandSonya @AutoImmuneLiver @amandaricciuto @garybader1
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We are grateful for partnership, grants, and corporate sponsorship to make this event accessible for #PSC patients!
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