The Canada Fundraising Committee, led by Sandy, is seeking volunteers to help with our upcoming online auction! She's got a toolkit ready to set you up with steps to approach local businesses for donations for the auction. Sandy's done this several times in the past to benefit PSC Partners Canada, has had great success, and will help every step of the way! Please send a message to Sandy through messenger, or send us a note at contactus@pscpartners.ca.
Mark your calendars! This is an important kickoff event for our PSC community! Join us!
ROADMAP Initiative Kick-off: A Community Event, April 20, 6-7:30 MT
Hear the exciting plans for webinars. Discover opportunities for you to have an impact on #PSC research priorities, & more. No reg. needed.
Info: bit.ly/PSC-ROADMAP
Third annual Green Shirt Day.
Register at beadonor.ca. Tell your Family. Be Inspired.
Organ donation saves lives.
Thank you Boulet family for all you are doing to help increase organ donation in Canada.
www.blood.ca/en/stories/logan-boulets-legacy-continues-third-annual-green-shirt-day
Logan Boulet’s legacy continues with third annual Green Shirt Day
www.blood.ca
By learning how to register to be an organ donor, signing up, and sharing his decision with family, the Humboldt Broncos player helped save lives 🇨🇦 We are doing something new! PSC Partners Canada is holding an online auction in June and we need your help obtaining items to auction off.
Please contact Sandy at sandravanostrand@gmail.com if you would like to help. Or comment below and Sandy will contact you on Messenger.
This is something concrete that we can do to bring us closer to effective treatments and a cure!
And you know all those people who ask what they can do to help? You can ask them to donate their skills and talents or help solicit items for auction, and you can invite them to come check out the auction.
Thank you Sandy and the PSCP Canada Fundraising Committee for all your work! 🇨🇦
Vaccine access news in your province: please message us or email contactus@pscpartners.ca. We are located in Toronto and are posting news for those being seen at the largest PSC clinic here; Would love help sharing info for other areas!
For post-transplant and vaccinated at UHN in Toronto.
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Viaduct
If the word “viaduct” evokes an image of a bridge carrying a road or railroad, you’re on the right track! But what is “The VIADUCT”? It’s the new PSC Partners Registry newsletter, so named with a nod to the PSC Partners newsletter, “The DUCT”, and the Canadian PSC Partners newsletter, “LOON DUCT”. But we also selected the word “viaduct” because of its meaning. The Registry is the bridge carrying data to researchers and helping our community reach the destination of a PSC cure. “The VIADUCT” is available to Registry participants and is an additional feature of our enhanced Registry.
Please join the Registry at pscpartnersregistry.org to add your voice. If you’ve already joined, be sure to check your inbox for the inaugural issue of “The VIADUCT,” which was published in March.
PSC Partners Seeking a Cure Canada AASLD PSC Support Australia PSC Support Sindee Weinbaum European Liver Patients' Association Association albi Albi España
UHN PSC patients in Toronto: pre-registration for COVID-19 vaccination is now open for those with PSC.
www.uhn.ca/COVID19_Vaccine/Pages/COVID19_vaccine_pre_registration.aspx#
www.uhn.ca
Our UHN programs and services are among the most advanced in the world. We have grouped our physicians, staff, services and resources into 10 medical programs to meet the needs of our patients and help us make the most of our resources. Pre-registration for COVID-19 vaccine is now open at UHN in Toronto for patients seen there who fall into "Organ transplant recipients" or "Other treatments causing immunosuppression." www.uhn.ca/COVID19_Vaccine/Pages/COVID19_vaccine_pre_registration.aspx#
www.uhn.ca
Our UHN programs and services are among the most advanced in the world. We have grouped our physicians, staff, services and resources into 10 medical programs to meet the needs of our patients and help us make the most of our resources. This event about Liver Disease & South Asian Communities in Canada is open to all - March 4, 12-1pm.
Liver Disease & South Asian Canadians
www.eventbrite.ca
Dr. Natasha Chandok presents on Liver Disease in the South Asian Canadian population. 24 years post-transplant! Sandra MacNeil Holdsworth we celebrate with you and thank you for your ongoing advocacy for patients in Canada!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Tuesday Feb 23, 6pm MT! Share with your favourite PSC teen living with PSC.There are a few spaces left in next week's ZoomRoom gathering for teens (ages 13-20). These virtual chats are a great way to garner support from and have fun with peer PSCers. Register here: bit.ly/TeenZoomRoom
#PSC #PSCPartners PSC Partners Seeking a Cure Canada
An opportunity for transplanted and listed patients to get your COVID-19 vaccine questions answered by a Canadian transplant centre. Monday 2/22 12-1.Recent developments in vaccination for COVID-19 have allowed many of us to glimpse the light at the end of the tunnel. However, many questions remain particularly for those who are immunocompromised. Please join us for a COVID-19 Vaccine Q&A on MONDAY, FEBRUARY 22, 12 -1:00p.m. EST.
With speakers Dr. Deepali Kumar, Dr. Istvan Mucsi, Dr. Nazia Selzner and Dr. Cecilia Chaparro.
TO SUBMIT YOUR QUESTIONS
1. Go to slido.com
2. Enter the event code: #ATC-COVID
This virtual event will give transplant patients, those on the transplant waitlist, and their families the opportunity to ask our experts questions about COVID-19 vaccines and more. This event is free and open to all who are interested.
#hearttransplant #livertransplant #kidneytransplant #pancreastransplant #lungtransplant #doublelungtransplant #covid19 #covidvaccine
Upcoming interactive Q&A Webinar - COVID-19: Staying Safe as Canada Reopens
Thursday, February 18, 2021
From UHN: "After hard-won gains in containing the community spread of the virus, parts of Ontario are poised to reopen this month. With information around COVID-19 changing on a daily, if not hourly basis, understanding the latest recommendations from health experts can be confusing and overwhelming. How can we stay safe as we navigate this new phase of the pandemic?
We will be joined once again by Dr. Alon Vaisman, Infection Control Physician at UHN, who will provide an update on vaccine distribution in Ontario, new research around timelines for receiving second doses, the prevalence of virus variants and day-to-day infection control advice as schools reopen.
Moderated by Christian Cote, Host of UHN's Behind the Breakthrough podcast.
WHEN: Thursday, February 18, 2021
TIME: 5 – 6 p.m.
REGISTER: tgwhf.ca/livestream
Please note, we will be offering a phone-in option for those who would prefer to join the conversation by telephone.
Once registered, you will have the opportunity to submit your questions. Although all of your questions are important, due to an overwhelming number of submissions, we may not get to all of them. We thank you for your understanding."
CASL and the Canadian Liver Foundation hosted a webinar on #COVID19 Vaccine Safety for Patients with Liver Disease. The recording is now available: bit.ly/3rOyqal
PSC Partners Canada supports #WorldCCADay. PSC is a risk factor for developing CCA, #BileDuctCancer. Screening & early diagnosis is essential! @CCA_Alliance aims to establish a global voice for #cholangiocarcinoma – Sign the GCA pledge today & share links.pscpartners.org/gcca-pledge
From globalccaalliance.com:
"I pledge to support the Global Cholangiocarcinoma Alliance, by:
- Supporting World Cholangiocarcinoma Day annually
- Increasing awareness of CCA by sharing GCA resources
- Sharing advances in CCA management through the GCA global network
- Supporting screening and prevention programmes where there is a known cause of CCA
- Striving for ways to achieve earlier diagnosis and deliver targeted treatment options
- Being part of the growing global GCA community
- Improving the lives of CCA patients, worldwide, through my support of the GCA
- Sharing the GCA pledge to encourage others to sign"The #WorldCCADay icon is everywhere today! This symbol, representing our global unity, is shared on this one day by all those working towards a far better future for all with #cholangiocarcinoma. Together we are stronger!
"I knew that if I or someone in my family needed a new liver, I would really want someone to come forward to donate."
Thank you to this altruistic living liver donor!
Hamilton Spectator news article inspires Dunnville woman to donate liver to Ancaster man
ow.ly
For a while, getting healthier was actually a hindrance to Dale Sutherland. The next PSC Partners Patient Conference is planned for spring 2022 in Boston. As soon as it is safe to gather, we'll plan a meetup in Canada.
Stay tuned for ways to connect virtually.
Nova Scotia (N.S.) recently became the first place in North America with presumed organ donor consent. A member of the #PSC community, Jessica, who recently passed, was a donor advocate in N.S. "She just wanted to be that ray of light, that hope," said her dad in a recent CTV News Atlantic news story. bit.ly/39fs25j
#PSC #organdonation #PSCPartners
'She was an incredible human': Cape Breton family remembers deceased organ donation advocate
bit.ly
It's been over one week since 30-year-old Cape Breton woman Jessica Tighe died of a rare form of liver disease. While the long-time presumed organ donor consent advocate's time was short, her family says she had a lasting impact on many. Crafted by PSC Community! Free screening with Q&A!
PSC Patient and Host of PSC Partners' Living with PSC Podcast Niall McKay is also an accomplished screenwriter and director.
Don't miss the free screening of his new movie The Ferry this weekend. bit.ly/TheFerryScreening
(Note: Due to mature subject matter, the movie is not for children.)
Check out the Living with PSC Podcasts here: bit.ly/LivingwithPSC
"The Ferry" Screening and Q&A hosted by New York Times' Cara Buckley
bit.ly
The Ferry short film screening Q&A hosted by New York Times cultural reporter Cara Buckley Timeline PhotosWe know transplant recipients have a lot of questions about the #covidvacccine - and rightfully so. Dr. Deepali Kumar, Infectious Disease Specialist for the Ajmera Transplant Centre at UHN has posted a video to answer some of your most pressing questions about transplant and the #covid19 vaccine.
Watch now: ow.ly/G6Ot50DfG8G
#kidneytransplant #livertransplant #lungtransplant #doublelungtransplant #hearttransplant #pancreastransplant #kidneystrong #lifeaftertransplant #staysafe #organdonation #beadonor #staysafe #healthcare #thankyoudoctors #medicine #facts #toronto #uhn #livingtx
If you missed Tuesday's webinar on PSC, IBD and the COVID-19 vaccines with Drs Rutherford, Bowlus, and Korzenick, the video is now available.
youtu.be/ZQcQgs9dAeI
For Canada & Ontario specific information, UHN hosted a webinar recently as well. Not PSC or liver specific.
youtu.be/od9j2jBZsBg
Please send us a note if you have resources such as this UHN webinar about vaccine distribution in your province that you find useful!
PSC, IBD, and the COVID-19 Vaccines
youtu.be
In the first of the PSC Partners Seeking a Cure 2021 Webinar Series, our panel of experts discuss PSC, IBD, and the COVID-19 Vaccines. Moderator and Speaker:... Help advance liver research! If you are living with itching (pruritus) caused by hep B, hep C, drug-induced liver-injury, auto-immune hepatitis, or primary sclerosing cholangitis, you may be eligible to participate in a new opportunity to help researchers understand the lived experience of this condition. Your voice is important – you can play a role in scientific understanding!
Pruritus must be at an intensity level of 4 or higher on a scale of 1-10 for at least the past 8 weeks in order to participate, and patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.
#PSC #Itching #Pruritus
With enormous sadness, we share this news item about our Canadian PSC Partners friend and transplant advocate. Jessica's life and courageous advocacy for organ donation will continue to inspire our work on behalf of all affected by PSC.
www.thechronicleherald.ca/lifestyles/regional-lifestyles/we-have-a-job-to-do-for-her-cape-breton-...
www.thechronicleherald.ca
When Jessica Tighe died from a rare liver disease last week, she didn’t just leave behind a husband, young daughter and countless family members and friends — she also left a legacy. On Thursday, Tighe, 30, lost her decade-long battle A member of the PSC community is asking: Is there a local to the Maritimes (in Canada) small group of PSCers?
Please go to the closed PSC Partners Support Group to respond.
www.facebook.com/groups/PSCPclosedgroup
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. News coverage from today's history-making start of presumed consent for organ donation in Nova Scotia!
"Our province is the first place in North America to have legislation that maximizes organ and tissue donations to save more lives, while fully respecting people’s ability to participate or not."
globalnews.ca/news/7583892/nova-scotia-organ-donor-families-recipients-presumed-consent-law/
globalnews.ca/news/7582651/nova-scotias-presumed-consent-law-for-organ-donation-takes-effect-2/
atlantic.ctvnews.ca/nova-scotia-organ-donation-presumed-consent-law-takes-effect-1.5271098
Good news for those needing transplant organs.
Nova Scotia organ donation presumed consent law takes effect
atlantic.ctvnews.ca
Nova Scotia’s new Human Organ and Tissue Donation Act officially came into effect Monday, becoming the first province or state in North America to pass presumed consent legislation. Guidance from Toronto Centre for Liver Disease on COVID-19 vaccine and chronic liver disease. Released 1/11/20.
The takeaway (quoted from team hepatologist, Dr. Shah)
"* COVID-19 Vaccine is STRONGLY ENCOURAGED for all people with liver disease.
*It appears safe and effective.
*People with liver disease do not appear to be at higher risk of side effects."
Please read this statement in full, and as always, speak with your health care provider to see how these recommendations apply to your condition.
And for more on PSC & COVID-19 vaccine, please attend the 1/19 6pm Central time, PSC Partners webinar. links.pscpartners.org/webinars
Mark your calendars for this important webinar. PSC, IBD, and COVID-19 Vaccines. Submit your questions early!Upcoming Webinar
PSC, IBD, and the COVID-19 Vaccines
Tuesday, January 19, 2021
This timely, important webinar is free and open to all. Click here for day-of login information. pscpartners.org/news-resources/educational-resources/webinars.html
Send questions in advance to: contactus@pscpartners.org
PSC Partners Seeking a Cure Canada #liverdisease #IBD #PSC #COVID19
Add to your New Year TO DO list:
- check your smoke detector batteries
- join/update your PSC Patient Registry!
The clinical survey in the registry is intended to be updated periodically - Doing it annually is a great goal. Or whenever there's been a change in your PSC/IBD or treatment.
Both are excellent investments of your time! One can even bring us closer to our collective goal of finding treatments for PSC!
www.pscpartnersregistry.org
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Canadians, and others not living in the US - the patient registry is open and seeking participation from PSCers everywhere.
Please see the note below from PSC Partners about the New Year and your registry participation. This is a great New Year practice! Join the registry if you aren't already a participant! And if you already are a participant, take 30 minutes to re-take and update the clinical survey. The collection of your responses over time makes the registry even more valuable.
Ping the registry team at registrycoordinator@pscpartners.org if you have any questions, concerns. And if there's something stopping you from joining - let them know!
You may have seen that PSC Partners recently published a provider map for the US health providers. A source of provider information that includes patient-reported providers in Canada is in the patient registry. Once in the registry, the participant can add their provider to the map, and can explore other patient-reported providers around the world.
New Year to do list: check your smoke detector batteries and join/update your patient registry! Both are excellent investments of your time! One can even bring us closer to our collective goal of finding treatments for PSC!
Happy New Year from 2021! Thank you to the many supporters who were able to send in their 2020 donations in the past few days. Despite all of the challenges of the pandemic, and with all of this support, we will continue our fight for treatments and a cure for PSC.
This year, almost $2000 was delivered to PSC Partners Canada through Facebook fundraisers. Thank you all who hosted.
We do not receive notification of who hosted these, or donated, so we haven't been able to express our gratitude!
Please take a moment and complete this form if you host a Facebook fundraiser to benefit PSC Partners Canada so we can thank you!
forms.gle/6x8zxQxTFmfa4get8
forms.gle
Please complete this form to submit information for tax receipt, notification, and recognition purposes. Thank you! If your donation is through another foundation (chimp, Benevity, United Way, Facebook, Canada Gives, etc, the tax receipt will come from that foundation). Happy New Year from PSC Partners Canada!
conta.cc
Countdown to 2021! December 30, 2020 Dear PSC Partners Canada Supporter: Please consider a donation to support the work of PSC Partners Canada during these last hours of 2020. Imagine welcoming a new A statement on COVID-19 vaccination for our PSC community from Dr. CHRISTOPHER L. BOWLUS, Co-Chair of the PSC Partners Scientific/Medical Advisory Committee
"Two SARS-Cov-2 vaccines have received emergency use authorization from the FDA with phased allocation of vaccines according to the ACIP COVID-19 Vaccines Working Group (www.cdc.gov/.../slides-12-20/02-COVID-Dooling.pdf) and individual state guidance.
Preventing morbidity and mortality and preserving social functions are the goals of the newest recommendations.
Currently, the CDC considers individuals with solid organ transplant (i.e. liver transplant) at increased risk of severe illness from the virus that causes COVID-19 and that individuals on immune weakening medicines or with liver disease might be at an increased risk for severe illness from the virus that causes COVID-19. (www.cdc.gov/.../people-with-medical-conditions.html)
To our knowledge there is no data related to severity of COVID-19 specifically in PSC patients.
Since no SARS-CoV-2 vaccine trials have enrolled immunocompromised patients, the safety and efficacy of the vaccines in PSC patients is not yet established. However, immunocompromised patients who have received recombinant protein-based vaccines (for example, Hepatitis B) have historically reported no major side effects, though efficacy is lower. More data about safety and efficacy will likely become available after clinical trials include more varied patient groups and participants are tracked long-term.
PSC patients are strongly advised to talk to their health care providers who can help them weigh the risks and benefits of receiving the vaccine.
Importantly, even after receiving the SARS-CoV-2 vaccinations, preventive measures like wearing face masks, maintaining physical distancing from those outside your household, and washing hands frequently will still be required."
A message from Sindee Weinbaum: representative of the ELPA Member Hetz, the Israeli Association For The Health Of the Liver, and the ELPA Working Group leader on Rare Liver Diseases on her decision to vaccinate.
Mark your calendars! January 19!Mark your calendars for this timely and very important webinar. It's free and open to all. Day-of login info and links to past PSC Partners webinars are here. pscpartners.org/news-resources/educational-resources/webinars.html
#PSC #PSCPartners #liverdisease #COVID19
On this last day of Hanukkah 2020, we send our wishes & dreams for a covid-free Hanukkah 2021.
A recording of the PSC Support UK livestream Q&A "Ask the Expert" session today on COVID-19 vaccines and PSC is available here. Thank you PSC Support UK for this much needed resource.
PSC Partners and PSC Partners Canada will be holding a webinar with an infectious disease specialist from UCSF 5pm Pacific time on January 19. Mark your calendars and bring your questions!
Stay tuned for details.
www.facebook.com/PSCSupport/videos/328861418101611/
Party people... if you need help navigating when your arrive at the party... event link will come to your email if you signed up at eventbrite. Your party EVENT LINK should have come to your email inbox.
Signing On
Step 1: Click on on the [EVENT LINK]
Step 2: A pop-up will show up asking to use your mic and camera. Click “Allow”
Step 3: Input your name - add PSC so people can find you! I'll be Mary PSC. Click “Join the Gathering!”
Gather.town Navigation Tips!
New places always take some getting used; to here are our tips for a smooth experience.
Key Controls
Move your character: Directional arrows on your keyboard
move your character along the map, climb stairs, and explore
Interact with an object: Press ‘X’ on your keyboard
we’ve got lots of goodies planned. See an object glowing yellow? ‘X’ will let you interact with whatever is hidden inside.
When you’re done with the object click the small x in the top right corner to get back to the party.
Move through people: Press ‘G’ on your keyboard
Feeling claustrophobic? Just like real life, you can’t walk through walls (unless you find a secret portal) but you can ‘ghost’ through people if you’ve gotten stuck behind a crowd.
Dance: Press ‘Z’ on your keyboard
Dance your heart out. We’re not kidding.
The Loon Duct has launched and should be in your inbox if you subscribe. To join our mailing list for quarterly newsletters from PSC Partners Canada, please go to: links.pscpartners.org/CanadaMailingList
fb.watch/2rnr7puWIk/
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Looking for a little holiday festivity and an experiment in virtual socializing. A cross between a Zoom meetup and video game?
Thursday Dec 17, 5-8PM EST, come join us in the PSC Partners room at this multi-organization online holiday party.
Register at Eventbrite to receive your link to attend.
Full info here: conta.cc/389KxGQ
Hey All!
Join us Thursday 5-8 EST! What is this? A virtual party using the Gather platform. Put together by our co-working space ("CSI") and at which we'll have our own separate "members lounge" room for PSC Partners Canada to gather. Guests are also welcome to explore the larger party if they like.
This is being set up as a virtual party space. And I haven't seen our Gather "room" yet, but here are some tips:
1. Be sure to register via Eventbrite.. It’s how you'll be sent the Gather link to join.
links.pscpartners.org/CanadaHolidayParty
3. For ease of locating our room, look for attendees with PSC in their "name" - and we encourage you to do the same when you set your name for the event. We can easily find each other in the list of attendees to “Locate” each other and find our room.
4. You will "arrive "outside of CSI Annex, a virtual rendering of our physical office building in Toronto. After you walk inside, please take the north stairwell, which leads to the “Member Room Lounge” which includes a door labelled PSC Partners Canada. If you are lost, the locate feature is a great way to guide you there.
5. Detailed info on how to navigate the space can be found here. This is sort of like a video game with avatars for attendees, and videoconferencing to visit with each other. docs.google.com/document/d/1pmXQmiDZsg3UGSRpzMnIoFAVh3QoL_UfjnDaVb4JeCU/edit?usp=sharing
6. CSI Staff will be stationed as greeters to help your guests get to where they need to go, and CSI will also have a Tech Support link available.
7. Feel free to explore the larger party as well! There’s a cookie quest where you can win great cookies, a dance party, and a whole universe to explore, so please do not feel confined to your rooms.
SAVE THE DATE & join us for our first online party!
Details in event description. This is a community event set up by the Centre for Social Innovation, a co-working space of which PSC Partners Canada is a member. We'll have a private PSC Partners Canada event space within the larger party.
Registration is required to get your access link! links.pscpartners.org/CanadaHolidayParty
Please join us and experiment with new ways of connecting with the Canadian PSC Community! Open to family, friends, caregivers, advisors, medical community, worldwide PSC community. Let's see if we can have some fun and enjoy some holiday cheer together!
About this Event
Join PSC Partners Canada and the Centre for Social Innovation for this online holiday bash. PSC Partners Canada will have a separate meeting room within this larger "make the world a better place" CSI community gathering.
CSI is all about community. Gathering is what we do. While we can’t host IRL cocktail/mocktail or cookie competitions this year, or dance in the Annex Garage all night, we CAN host a blow out, COVID-safe, online party - CSI-style.
Enter Gather.Town. It’s a virtual gathering space built to mimic real life interactions. Walk up to people and their videos and voices appear on your screen. Walk away and they disappear. Just like real life, almost. We love it and we can’t wait to share the spaces we’ve built with you.
Chat, play games, explore with coworkers, go it alone and meet other members. A virtual gathering to celebrate all we’ve accomplished (and endured) this year. Gather with the community to celebrate the holiday season and mark the end of a year we’re not soon to forget!
Event Schedule
5pm The Holiday Gathering begins: Gather.town & GoogleMeet open, The Cookie Quest Commences
5-7pm Tarot Readings with Laura
6pm Making the Perfect Holiday Drink with Temperance Cocktails
7pm A Holiday Wish - remarks from Tonya Surman, CEO, CSI Toronto
7:15pm The Annual BowTie Award honouring the excellence of a community member
7:30pm Dance, Explore, and Chat the night away!
Join us for the best virtual party of the holiday season.
Accessibility of the Event
The Holiday Gathering is being hosted through a combination of the Gather.town platform and GoogleMeet conferencing service.
Attendees will be sent a link to sign into CSI’s Gather.town space where they can log-in to move around a grid map of a virtual world, and speak or chat with other attendees through video and text chat based on their proximity to one another on the map.
Alternatively, attendees can book an EventGuide and obtain a dedicated conference link to join from their computer or call from their phone. The Event Guide will present the gather.town world to them via screen sharing and live voice description.
More info on the EventGuide at the registration page on eventbrite.
Another benefit for those of us living in chilly Canadian winter - multiple layers in this mask help keep your face toasty while doing your holiday errands!
PSC Awareness! COVID-19 Safety! Toasty cheeks ;-)
Get yours now! links.pscpartners.org/maskeradeCa for a suggested donation of $10.
PSC PATIENT COMMUNITY: HAVE YOU HAD OR SUSPECT HAVING HAD COVID-19? PSC RESEARCH NEEDS YOU!
This is an urgent request to:
1. Contact Registry Director at rachel@pscpartners.org
2. Complete the PSC Partners COVID-19 survey launched in April 2020 upon seeing that there was no tool to capture COVID-19 in PSC patients. links.pscpartners.org/covidsurvey.
3. If you haven't joined the PSC Partners Registry, do join! Your de-identified data is crucial for research. www.pscpartnersregistry.org
If you are a registry participant and have had COVID-19, please update your surveys. The Clinical Survey has a short section on COVID-19.
We're together in the fight, whatever it takes!
the Registry Team
Finding a way to smile and laugh in the midst of COVID-19, PSC, and 2020. Stay safe everybody, wear your mask, and join the PSC Partners MASK-erade! Raising spirits and #PSCAware ness!Did you know that Ugly Sweater Day is just 11 days away? Yep - Dec. 18th. What goes better with an ugly sweater than a beautiful PSC Partners mask? Order your mask today, take a photo wearing it with your ugly sweater, and post. Let's share the fun and spread awareness about #PSC. Masks can be mailed in US and Canada. Supplies limited. Get info here: pscpartners.myetap.org/fundraiser/2020Mask-erade/
#PSCPartners #liverdisease
Stay safe and encourage PSC awareness at the same time! Join the PSC Partners MASK-ERADE! Delivery available in US and Canada. conta.cc/2JNycPP
December 1, kicking off the season of sharing! 2020 has been such a hard year. If you are able to support PSC Partners Canada, Giving Tuesday 2020 is a good day to make an annual gift. Know your gift will be extra appreciated during these difficult times.
We are working harder than ever to fund research towards treatments and a cure for PSC.
Give online here: my.charitableimpact.com/campaigns/psc-partners-canada-ongoing-campaign
Other options: pscpartners.ca/how-to-donate/
PSCers awaiting transplant or post-transplant may find this upcoming webinar from Canadian Donation and Transplantation Research Program of interest.💻 CDTRP SPECIAL WEBINAR 💻
Join us for a 90-minute webinar on Friday, November 27 to openly discuss the challenges and anxieties patients, families and donors may face concerning the 2020 Holiday Season.
Register for free here 👇https://cdtrp.zoom.us/webinar/register/WN_bNg8zF-CQnur7JmQ5lOLMg
From a Canadian hepatologist with a front-row seat to hepatology during a career spanning 1978-2019: doi.org/10.3138/canlivj-2020-0021
Reminiscences of a soon-to-be ex-hepatologist | Canadian Liver Journal, Morris Sherman, MBBCh, PhD, FRCP(C)
Well worth a read for an overview of what's happened and where things are going. And congratulations on your retirement Dr. Sherman!
Starting in 25! Don't miss it - the final webinar in the 2020 PSC Partners Conference series. PSC: Research and Predictions with Johannes Hov, Gideon Hirschfield, Tom Karlsen and Lisa Forman. Norway, Canada, Colorado. Join us!
pscpartners.org/.../educational.../webinars.htmlJust 30 minutes until the PSC Partners webinar featuring an amazing panel of #PSC international experts. It's free and open to all. Join the conversation. pscpartners.org/news-resources/educational-resources/webinars.html
Don't miss the final webinar in the 2020 series!
Excellent speakers and topics!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. This content isn't available at the moment
When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. www.facebook.com
A perfect day to view last week’s PFDD - Making Our Voices Heard Forum. Please use the time-stamps in the schedule below to navigate the 6-hour recording. And don’t forget to add your patient comments by Nov 6 to be included in the Voice of the Patient report to be delivered to the FDA. Thanks to all who contributed! Many Canadians can be found sharing their stories along with others from a global PSC community. links.pscpartners.org/ViewPFDD 1. Welcome and Introductions 0.00 2. Overview and Objectives of the Patient-Focused Drug Development Program 14:20 3. Natural History, Clinical Management and Treatment of PSC 22:00 4. HOW DO PSC CLINICAL SYMPTOMS AFFECT MY QUALITY OF LIFE ? 33:21 a) Patient Perspective on Key Clinical Symptoms – Patient Testimonials : Pain: Afsana (35:19), Pruritus: Tim (39:46), Fatigue: Jessica (44:03) Impaired cognitive function: Elizabeth (48:09), Living with co-morbidities: Dan (52:11) b) Overview and Relevant Results of PFDD Survey and Polling Instructions/Questions 56:05 c) Open Forum Q & A – Zoom Panelists 1:08:42 Elizabeth, Jerome, Tawny, Joe 5. WHAT ARE THE CONSEQUENCES OF THE LACK OF EFFECTIVE TREATMENTS FOR MY PSC? 1:53:25 a) Patient Perspective on Advanced Disease – Patient Testimonials: Cholangiocarcinoma: Kevin(1:53:32), Cirrhosis and pre-transplant: Kristian (1:57:35), Post-transplant and recurrent PSC: Todd (2:01:08) b) Relevant Results of PFDD Survey and Polling Questions 2:04:58 c) Open Forum Q & A – Zoom Panelists 2:14:58 Alison, Niall, Monika, Nicola 6. Community Images and Artwork 2:47:03 7. WHAT ARE THE UNIQUE ISSUES FACING PEDIATRIC PSC PATIENTS AND THEIR CAREGIVERS? 3:17:12 a) Natura l History , Clinical Management and Treatment of PSC for Pediatric and Adolescent Patients 3:18:13 b) Pediatric and Adolescent Patient Perspective - Patient and Caregiver Testimonials : Living with PSC: Bek (3:32:26), Parent concerns: Alex (3:35:10), Living donor pediatric transplant: Richard (3:39:06), Pediatric transplant journey: Jennifer (3:43:16) c) Relevant Results of PFDD Survey and Polling Questions 3:47:36 d) Open Forum Q & A – Zoom Panelists 3:57:05 Chelsea, Afsana, Willie, Richard 8. HOW CAN THE CURRENT TREATMENTS OF PSC BE IMPROVED AND MADE MORE TOLERABLE FOR ME? (4:25:43) a) Patient Perspective on PSC Treatment and Related Conditions – Patient Testimonials: Treatment of pruritus: Kristina (4:26:15), Management of other key symptoms: Lindsey (4:30:02), Diagnosis and treatment of acute cholangitis: Laura (4:34:23) Management and treatment of IBD in PSC patients: John (4:38:30), Use of off-label therapies: Jay (4:42:48) b) Relevant Results of PFDD Survey and Polling Questions 4:47:05 c) Open Forum Q & A – Zoom Panelists 4:54:26 Kerrie, Lalit, Fred, Rachel 9. HOW CAN THE PATIENT PERSPECTIVE BE INCORPORATED INTO THE CLINICAL DEVELOPMENT OF PSC TREATMENTS? 5:21:01 a) Patient Testimonial: Special Considerations for Clinical Trials in Pediatric and Adolescent Patients , Lisa Pedicone 5:21:20 b) Patient Testimonial: Understanding the Patient Experience and Clinical Trials – Lessons Learned, Nathan Baggett 5:26:05 c) Relevant Results of PFDD Survey and Polling Questions 5:32:00 d) Strategies to Incorporate the Patient Voice into Clinical Drug Development , Ricky Safer 5:41:47 10. Summary and Wrap-Up 5:56:39 Awareness day! Instructions for FB profile frames below.Remember to put a frame around your profile photo in honor of PSC Awareness Day. Just click on Edit, add frame, and choose the PSC Partners frame. You can even schedule it to be removed on Oct. 30. Easy-Peasy. Thank you! #PSCaware
Live Now! Join us!!!The countdown has begun...Just 30 minutes until the start of the Making Our Voices: Patient-Focused Drug Development Forum. You don't want to miss this once-in-a-lifetime event. Visit our website to join the Livestream event. pscpartners.org.
PSC Partners Seeking a Cure Canada #PSCVoicesPFDD
Calling all PSCers, family, friends, and caregivers of PSCers. Don't miss the Making our Voices Heard Meeting THIS FRIDAY OCT 23 10AM-4PM EST.
Sign up here: pscpartners.org/pfdd-forum-registration.html
Hey Canadian rare disease patients and patient advocates, CORD is doing a survey on patient access scientific journal publications. Please add your voice!
Super quick - five questions or so.
To access the survey: forms.gle/H6AiUwQ52NEfDTsu6
From CORD:
The Canadian Organization for Rare Disorders is conducting this quick survey to understand patients needs for improved access to articles in scientific journals. Your answers will help us in our advocacy work.
Thank you in advance. If you have any questions please contact us.
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
Survey: Patient and Public Access to Scientific Articles
forms.gle
The Canadian Organization for Rare Disorders is conducting this quick survey to understand patients needs for improved access to articles in scientific journals. Your answers will help us in our advocacy work. If you would like to extend an invitation for the upcoming PFDD to any of your healthcare providers, friends or family, this link may be helpful.
links.pscpartners.org/ca_invite
Mark your calendars, sign up, and attend!!!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. The 1st Anniversary Issue of the Loon Duct is out! Congrats to the Loonies team!
conta.cc/2SdJCgX
If you want to be sure to get this delivered to your inbox, please sign up at vr2.verticalresponse.com/s/websitesignupform18691697673980
Thank you Richard Ayuen and Canadian Liver Foundation for sharing this PSC journey and for raising awareness of PSC.
Timeline PhotosHave you read Sprott Magazine 2020 yet? Check out pg 16 of the inaugural edition for some familiar faces 😉
@sapisochin @tgwhf #livertransplant
ow.ly/fvJ950BxYx6
PSC Partners Canada received a lovely donation with the message "For hope and health in the Jewish new year" and we'd like to amplify these beautiful wishes for hope and health.
PSC Partners Canada wishes our Jewish family a happy and healthy NEW YEAR! Shana Tova!
Tonight! Join us!Tune in Monday evening (7:30 PM EST) for important updates on transplant, clinical trials for PSC, and where your donations go - PSC Partners' supported research.
Details can be found in your inbox if you subscribe, or here : conta.cc/2ZshevD
Tune in Monday evening (7:30 PM EST) for important updates on transplant, clinical trials for PSC, and where your donations go - PSC Partners' supported research.
Details can be found in your inbox if you subscribe, or here : conta.cc/2ZshevD
We do the work we do, and we ask this community, all of us affected by PSC, to take part, because we envision a world without the pain and loss caused by PSC. A message from a parent of a PSCer who is no longer with us. Please join our efforts, take the Our Voices survey, and attend the upcoming Making our Voices Heard meeting on October 23. Thank you.
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. HELLO MEN! We need you!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Hey PSC family: If you haven't already filled out the Our Voices survey, please do so in honour of Tawny's 5th year re-birthday on 9/8/20! She's asking for your support!
Info on the survey and links pscpartners.org/get-involved/pfdd-meeting.html
This is a great opportunity to join the newly upgraded patient registry, or visit your existing registry account and re-take the Clinical Survey at the same time you complete the Our Voices survey!
Let's celebrate Tawny, the gift of life, Tawny's generous selfless donor, and all many caregivers, surgeons, and doctors who made this possible!
Happy re-Birthday Tawny!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Caregivers - mark your calendars and join us!Hey, Caregivers of PSC patients, including parents, spouses, siblings, and more...Our next ZoomRoom gathering is for you. Let's stay connected and support one another! Pre-registration is required. bit.ly/3geK5ZV
PSC Partners Seeking a Cure Canada #PSC #YNAZone
FREE 8-week virtual entrepreneurship training opportunity for Canadian youth (16-29) who are interested in starting their own business.
Applicant needs to self-identify as having experienced mental health and/or addiction challenges. Many folks with PSC experience depression and/or anxiety.
This program has been running for a while, and has an excellent reputation. Applications are due soon for the fall cohort - Sept 9.
Check it out!
risehelps.ca/enterprising-youth-plus/
EnterpRISEing Youth Plus | Rise
risehelps.ca
Are you 16 to 29 years old? Design your business online with EnterpRlSEing Youth Plus, a FREE 8-week entrepreneurship program which combines the accessibility and flexibility of online learning with virtual in-class support and coaching. Short-term resource for PSC paediatric patients seen at SickKids.
SickKids staff in Psychology and Social Work are offering free brief therapy sessions to support the #mentalhealth and #wellness of SickKids patients and their families during these challenging times. Email emotionalsupport.covid19@sickkids.ca to self-refer.
Thank you SickKids Foundation
Hey Canadian PSCers! If you haven't joined the patient registry and taken the Our Voices survey, do so before Monday to be eligible for the grand prize drawing - free registration to the 2021 PSC Partners annual conference, planned for Boston.
If you don't know why this is important, please take a listen to this recent interview with Dr. Gideon Hirschfield from the Toronto Centre for Liver Disease. (7 minutes)
www.pscpartnersregistry.org/component/content/article.html?id=1063
Enjoy this tongue-in-cheek trailer to see some of the features of the upgraded PSC Partners Registry! Take a tour, update your Clinical Survey if you are a participant, and JOIN if you aren't! Don't forget to take the OUR VOICES survey if you haven't yet. EVERY PSC VOICE COUNTS!
pscpartnersregistry.org
PSC patients worldwide are invited to join the PSC patient registry. Note some friendly Canadian faces have agreed to join the "face" of the registry landing page.Your PSC Partners Patient Registry Team is eager to formally introduce you to the upgraded registry website and enhanced registry program. We had a “soft launch” on July 9th, so any of you who joined or returned to the site to complete the “Our Voices” survey have had a sneak peek! It was important to let the survey have the spotlight in recent weeks, and now we’re excited to move the spotlight to the upgraded registry site.
The mobile-friendly site, found at pscpartnersregistry.org/ has a whole new look and feel, with enhanced features and additional resources. With a growing database of registrants’ de-identified medical information, the Registry remains our community’s most powerful means of advancing PSC research. The new site is not just a pretty facelift – the whole Patient Registry experience going forward will be more interactive and communicative, including updates on how your data is at work in studies and trials; information about other important PSC research; additional, focused surveys linked right to the website; and a quarterly newsletter that will launch later this year. Current registry members, your login will work at the new site.
Please help us help you – check out the new Registry site at pscpartnersregistry.org/ – we are together in the fight!!
PSC Support
PSC Support Australia
PSC Support in Israel
Primær skleroserende cholangitt (PSC) / Primær biliær cholangitt (PBC)
PSC-support (FB primary sclerosing cholangitis & transplant support)
PSC Caregivers
Albi España
Association albi
AASLD
American Liver Foundation
Canadian Liver Foundation
Community Liver Alliance
Brigham and Women's Hospital
Center for Autoimmune Liver Disease at Cincinnati Children's Hospital
American Gastroenterological Association (AGA)
National Organization for Rare Disorders, Inc. (NORD)
Canadian Organization for Rare Disorders
EURORDIS - European Rare Diseases Organisation
Chan Zuckerberg Initiative
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. “When my family was attacked by PSC, I wanted everyone in the world to help me fight. Of course, the world continued to function as usual. We now have an opportunity to have drug developers and researchers help us battle PSC. They bring experience and resources used to defeat other diseases to our battle with PSC. We need to help the drug developers and researchers understand how PSC impacts your life and/or the life of a loved one. In addition, we want them to know that we are passionate about finding a cure for PSC. Our information about PSC will encourage them to join our fight and provide them information to develop a battle plan to help defeat PSC. So, how do we provide them information? We complete OUR VOICES Survey. Completing the survey could be the most important tool we have at this moment to beat PSC.
Please take a few minutes to complete OUR VOICES Survey."
Dr. Willie McKinney, PSC Caregiver and Board Member, PSC Partners
Get more info and a link to the survey here: pscpartners.org.
PSC Partners Seeking a Cure Canada #psc #pscpartners
When asked about the importance of the OUR VOICES Survey, Dr. Veronica Miller, Executive Director of the Forum for Collaborative Research and Professor (Adjunct) at UC Berkeley School of Public Health, said, "Each individual affected by PSC faces so many challenges that could be ameliorated by safe and effective treatments, if they were available. What will it take to get such treatments developed and available? It will take strong and dedicated commitment from ALL stakeholders to tackle the stubborn roadblocks in drug development for PSC. But the most important voice is the voice of the PSC community. Only the patients and caregivers can tell the story of living with PSC, what treatments they need, and talk about their willingness to participate in clinical trials testing the safety and efficacy of new treatments. The OUR VOICES Survey is a unique opportunity to make each individual voice count and let the drug developers, clinical researchers, and the FDA know that the PSC community stands ready to make this happen. Your voice will be heard in the OUR VOICES Survey.”
Get more info and a link to the OUR VOICES Survey here. pscpartners.org/get-involved/pfdd-meeting.html
An upcoming virtual conference from our friends at CALD - patients and families living with paediatric autoimmune liver disease are invited. This is a fantastic opportunity to learn from and interact with PSC paediatric specialists.It is my great pleasure to invite you to the A-LiNK Community Virtual Conference at Cincinnati Children’s Hospital Medical Center.
This conference is sponsored by the Center for Autoimmune Liver Disease (CALD) at Cincinnati Children’s Hospital Medical Center and will offer a comprehensive discussion and update on the ongoing development of a pediatric AILD-specific learning health system (A-LiNK) within the existing infrastructure of ImproveCareNow. In which healthcare, continuous improvement, technological innovation, social infrastructure, and research are purposefully integrated.
It is our hope that you will be able to interact as scientists, patients, families, physicians, stakeholders, and advocates to identify the best practice variability relating to treatment protocols and develop outcome measures to form the basis of future efforts.
I’d like to thank each of you for considering attending our conference and bringing your expertise to our gathering. I would like to express my sincere appreciation to all the participants, financial sponsors, supporting organizations, and committee members who will make this first A-LiNK Community Conference successful.
- Amy Taylor, MD
For more information & to register: www.globalcastmd.com/shows/details/alink2020
And now a message from our motivational coach, honorary Canadian, and hockey star. Thanks JV!
We are seeking PSC voices from everywhere in the world. The more of us who speak up, the more we will be heard.
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. A message and some laughs from Ken and family to all the MALES living with PSC. Be like Ken, and please take the OUR VOICES survey!
Link to THE EMAIL from Mary with full info on the survey and how to take. conta.cc/2PLdYWP
Paediatric PSC Webinar Wed night! Join us!
link to webinar can be found here: conta.cc/3gN1Wbg
New publication: An important review of state-of-the-art of patient-reported quality of life measures and use for PSC (and PBC) research and clinical trials. Thank you authors, including @PSCPartnersSeeking aCure Ricky Safer and Rachel Ciaves.
"Given significant gaps in our current knowledge regarding patient experiences and preferences, more qualitative studies and systematic approaches for incorporating the patient voice are needed in current research endeavors, including clinical trials, among patients living with PBC and PSC."
If you haven't already, please complete the Our Voices survey to help incorporate your patient voice into the upcoming meeting with the FDA. pscpartners.org/get-involved/pfdd-meeting.html
link to paper: A Systematic Review of Patient‐Reported Outcomes in Primary Biliary Cholangitis and Primary Sclerosing Cholangitis
aasldpubs.onlinelibrary.wiley.com/doi/full/10.1002/hep4.1567
A public appeal for a living liver donor for Daniel White, PSCer in Ontario. Spread the word!
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. Take 2 minutes to hear from PSC Partners CEO Ricky Safer about why taking the Our Voices survey this week is so important. And while these survey results will be used to bring OUR VOICES to a meeting for an FDA (US regulatory) audience, the way drug development usually happens is that new meds come to larger markets first, either through the FDA or through the EMA, so helping the FDA help PSCers will impact PSCers worldwide.
pscpartners.org/get-involved/pfdd-meeting.html
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When this happens, it's usually because the owner only shared it with a small group of people or changed who can see it, or it's been deleted. NYT article on the impact of invisible disabilities. The author has a strong opinion on the decision to stay private. What do you think?
www.nytimes.com/2020/07/10/style/invisible-disabilities.html?smid=nytcore-ios-share
What Happens When You’re Disabled but Nobody Can Tell
www.nytimes.com
The author and clinical psychologist Andrew Solomon examines the disabilities that ramps and reserved parking spots don’t address. Today is our webinar: The Basics of Primary Sclerosing Cholangitis (PSC). No reservation needed. Just click here for login info. pscpartners.org/news-resources/educational-resources/webinars.html
Listen to four experts from UCHealth : Dr. Lisa Forman, Dr. Michael Kriss, Dr. James Burton, and Dr. John Norvell.
#PSC @PSCPartnersCa #liver
Don't miss it! 4th in the 2020 Patient Conference Webinar Series.Next Tues. is the 4th in our PSC Partners 2020 Conference Webinar Series: The Basics of PSC.
From PSC 101 to Interpreting Test Results to Symptom Management, this webinar has it all!
It's free & open to all. Click here for login info. bit.ly/3ge2mXp
#PSC #PSCPartners2020 #LiverDisease UCHealth Children’s Hospital Colorado
Parents of paediatric PSCers - Dr. Ricciutio, SickKids (Toronto, ON) gastroenterologist, will be presenting her research on paediatric IBD/PSC at the CALD journal club at 2pm EST this Friday. PSC patients and caregivers are invited to attend and participate in the journal club. Thank you Center for Autoimmune Liver Disease at Cincinnati Children's Hospital for hosting!We'd like to introduce our speaker for this week's Journal Club, Dr. Amanda Ricciuto!
She will present about how Children with primary sclerosing cholangitis (PSC) often have inflammatory bowel disease (IBD). However, the type of IBD that happens in kids with PSC seems to be different (than in kids who do not have PSC). It affects different spots in the gut and the inflammation seems to be more “silent” (in other words, there can be inflammation in the gut with relatively few symptoms). Kids with PSC and IBD also seem to be shorter and lower weight.
Dr. Amanda Ricciuto completed her medical degree and General Pediatrics training in Montreal at McGill University. She completed fellowship training in Pediatric Gastroenterology at SickKids, including advanced training in the management of paediatric inflammatory bowel disease (IBD). During that time, she obtained a PhD in Clinical Epidemiology and Health Care Research at the Institute of Health Policy, Management and Evaluation at the University of Toronto. Her PhD focused on IBD-associated liver disease. Dr. Ricciuto’s areas of specialty include pediatric inflammatory bowel disease and IBD-associated liver disease, particularly primary sclerosing cholangitis (PSC).
Join us Friday, July 10 @ 2pm EDT for this Zoom Meeting: zoom.us/j/91829170908?pwd=NHR2MFU0MFV1UEpkRHFkS1RGallGQT09
(Reminder to download the Zoom APP prior to the meeting)
#AIH #PSC
From PSC Support UK: This week, the PSC Wellbeing Project researchers published an article that provides an in-depth look at:
- how PSC can impact psychological wellbeing,
- how psychological distress arises
and includes advice tailored to individuals, families and health professionals on how to best support each other.
The UK PSC patient community has been incredibly engaged in helping the efforts of PSC Support to drive forward much-needed PSC research, not only towards a cure but also to address the emotional burden of living with this complex, incurable disease. One of our bigger asks was for PSC patients and those who support them to join virtual online groups to talk about how PSC affects them over four weeks for the PSC Wellbeing Project. If this was you - THANK YOU! (
We'll now use these findings to advocate for better services for people living with PSC.
journals.plos.org/plosone/article?id=10.1371/journal.pone.0234624
journals.plos.org
Introduction The impact of living with Primary Sclerosing Cholangitis (PSC) on psychological wellbeing is not well-known. A recent scoping review by the authors found that both depression and anxiety frequently featured in the accounts of those living with the illness. However, less clear were the f...
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- (647) 848-6953
- contactus@pscpartners.ca
