IT'S SCIENCE TUESDAY! This year, we announced the funding of four international PSC research studies, plus one more in conjunction with our affiliate PSC Partners Canada. Check them out! Together, we are creating a world where a #PSC diagnosis comes with a cure. #PSCaware @pscpartnerscanada
IT'S SCIENCE TUESDAY! This year, we announced the funding of four international PSC research studies, plus one more in conjunction with our affiliate PSC Partners Canada. Check them out! Together, we are creating a world where a #PSC diagnosis comes with a cure. #PSCaware @pscpartnerscanada
CLICK WEBLINK IN BIO AND SURVEY TAB AT TOP OF HOMEPAGE. Little is known about symptoms experienced by a person with #PSC before and during a PSC flare or acute cholangitis attack. Your survey responses will help bring clarity to this poorly understood, common PSC occurrence and are an important step towards finding treatments and improving quality of life for those impacted by PSC. This survey should only be taken by PSC patients, not caregivers. If possible, please complete the survey by May 24th, as we would like to share this important information at an upcoming meeting with PSC doctors and researchers. #PSCaware @pscpartnerscanada
This is the flip side of those fun trips and stuff - me feeling pretty beat up after two weeks of surgeries, biopsies, scans, appointments, and the usual dose of pain, uncertainty and ptsd. ✨ Looking forward to getting home and resting. Just like my beloved Tumbawamba song, I may get knocked down (a lot), but I always get up again (eventually) with the help of my family, friends, and overthinking the living shit out of everything (and writing about it). ✨ For more of this un-watered-down version of me (not always palatable for wide public consumption), check out my Patreon.
This program is enrolling now! FOR MORE INFORMATION, SCAN THE QR CODE. Register for Online Wellness Program for People with PSC and Post-transplant Folks: Supported by PSC Partners and PSC Partners Canada� Life with PSC and other diseases like IBD can be challenging for physical, emotional, and mental health. A team of researchers led by Dr. Puneeta Tandon, a hepatologist at the University of Alberta, developed an online program focused on movement, relaxation, and stress reduction. The Empower Program is a great way for everyone with PSC and/or post-transplant folks to participate in and benefit from this valuable research program. #PSCaware @pscpartnerscanada
Attention all paediatric PSC patients and families! Canadian Paediatric PSC Day is happening on June 1st and we're excited to announce that the registration deadline has been extended to May 7th!! You don't have to be Canadian to attend this special event. This is a rare opportunity to connect with other families who are also living with PSC. Don't miss out on this chance to meet and support each other, register before May 7th. We really want you to be there! #PSCaware #PrimarySclerosingCholangitis #Paediatric #pediatricpsc PSC Partners Seeking a Cure
We encourage everyone in the #PSC community to attend this special event that brings together pediatric PSC patients, their families, and experts. It’s a unique opportunity open to all ages. If you have any questions or concerns, we are here to help. Email Jessica at [email protected]. Register and find more information here by visiting the PSC Partners Canada website. #PSCaware @PSCPartnersCanada
We'd like to extend a HUGE thank you to the amazing members of our Board of Directors who met over the weekend to plan for the future of #PSC Partners. Your time, commitment, and expertise continue to move us closer to our goal of finding treatments and a cure. We love and appreciate each and every one of you more than you'll ever know! #PSCaware
Did you catch the most recent edition of our monthly newsletter The Duct? Included in this issue are Conference updates, information about the Empower program, which is an exciting endeavor for people with #PSC, a listing of our newly-funded research programs, and more. Check it out! CLICK WEBLINK IN BIO AND NEWS AND RESOURCES TAB ON HOMEPAGE. #PSCaware
Last week PSC Support CEO, Paula Hanford, attended a meeting with international PSC organisations to discuss plans for PSC Day later on in the year. We are working together to create a world where PSC has effective treatments and a cure! @PSCPartnersCanada @elpa.eu #LetsBeatPSC #PSCAware #PSCAwarenessDay
We are half way through April which means there are less than 2 weeks left to register for the Canadian Paediatric PSC Day on June 1st in Toronto, Canada. 😮 Don't miss this opportunity to learn more about paediatric PSC and connect with other families living with PSC. Child care will be provided and travelshilps are being offered on a first come, first served basis. French and ASL translation are also being offered. Scan the QR code in the poster to register today! @psc.partners #Canadianpaediatricpsc #PrimarySclerosingCholangitis #PSCaware #Paediatric #PSC
THIS EVENT IS TOMORROW, AND THERE'S STILL ROOM FOR THE TEEN IN YOUR LIFE! This virtual peer-to-peer support group is for teens (13-18) with PSC and/or those who are post-transplant due to #PSC. These gatherings are a great way to talk with others who truly understand what you are going through and is also a fantastic way to make some friends before the upcoming Conference. Pre-registration needed. CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. #PSCaware
CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. WE CAN'T WAIT TO SEE YOU SOON! #PSCaware #PSCPartners2024
It makes us so happy to receive photos of folks from the #PSC community getting together! 💓 Here’s #PSC Partners Board Member and PSC Caregiver Kathy (center) enjoying lunch in Ireland with Living with PSC Host and Post-transplant patient Niall and his amazing wife Marissa. #PSCaware
This virtual peer-to-peer support group is for teens (13-18) with PSC and/or those who are post-transplant due to #PSC. These gatherings are a great way to talk with others who truly understand what you are going through and is also a fantastic way to make some friends before the upcoming Conference. Pre-registration needed. CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. #PSCaware
Save the Date: June 1-July 31, 2024 More information coming soon. #PSCaware #PSCWALK8301
Hey, #PSC Community in Florida and surrounding states, don't miss this amazing opportunity to attend an incredible patient education day! Cost is just $25, if you register by April 7th ($35 after), and the agenda is PACKED! VISIT OUR EVENTS PAGE FOR MORE INFORMATION, INCLUDING THE AGENDA AND REGISTRATION FORM. CLICK WEBLINK IN BIO. #PSCaware
"I just thought the Conference was the very best thing that has happened in a very long time," said Joanne Hatchett. "We found so much synergy in people being together." As we all get excited for the 2024 PSC Partners Annual Conference, we thought we'd take a look back at last year's Conference. Check out this discussion between PSC Partners Medical Science Liaison Joanne Hatchett and Host of our Living with PSC Podcast Niall McKay. CLICK WEBLINK IN BIO AND PODCAST LINK AT BOTTOM OF HOMEPAGE #PSCaware
We know folks are excited about the upcoming 20th Anniversary 2024 Annual #PSC Partners Conference. So are we! We are working on Registration now. In the meantime, sign up for our Conference Interest Form. CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. #PSCaware #PSCPartners2024
Have you heard?? PSC Partners is holding a Canadian PSC Paediatric Day at the Arts & Letters Club in Toronto on June 1st and registration is OPEN!! Travelships are also available on a first come first served basis (the link can be found on the registration form on line). We are so excited to meet you all! Please see link in bio to register #PrimarySclerosingCholangitis #PSCaware #Paediatric #Canadianpaediatricpsc
More information coming soon! #PSCPartners2024 #PSCaware
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. Despite being in end-stage liver disease (ESLD), she has been able to find many things to be greatful for. Read her full story by following the link in our bio. #PSCaware #PrimarySclerosingCholangitis #livingliverdonor #liverdiseaseawareness #livertransplant
Our next virtual support group is for folks who are living with the loss of someone in the #PSC community. You can talk as much or as little as you'd like, because everyone understands what you are going through. Pre-registration required. Click here: https://bit.ly/April2ndLivingwithLossZoomRoomRegistration #PSCaware
PSC Partners Seeking a Cure Canada is pleased to announce that registration is NOW OPEN for the Canadian Paediatric PSC Day being held on June 1st at the Arts and Letters Club in Toronto! Travleships are available on a first come first served basis for those who may require some financial assistance to attend, but be sure to register for the event first! You can register by visiting the link in our bio. #PSCaware #PSCPartners #PrimarySclerosingCholangitis #Paediatric #pediatricpsc @psc.partners
SAVE THE DATE for our 4th Annual WALK83.01 for #PSC FUN fundraiser. More info coming soon. #PSCWALK8301 #PSCaware
GUESS THE LOCATION OF OUR CONFERENCE! We are on THE LAST DAY AND THE LAST GRAPHIC of a guessing game! Find a hidden letter in our posted graphics. Six were posted over the last three days, including two earlier today, and this is the seventh and last. Once you have all the letters, unscramble them to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. Here's graphic #7 -- the last letter you need to unscramble the location of the Conference. Where are we gathering this year? A VIDEO POSTED THIS AFTERNOON WILL GIVE YOU MORE INFORMATION ABOUT THIS EXCITING LOCATION! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! We are on THE LAST DAY of a guessing game! Find a hidden letter in our posted graphics. Four were posted over the last two days, one was posted earlier today, and this is the sixth. Once you have all the letters, unscramble them to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting ONE more today. WATCH THIS AFTERNOON FOR A VIDEO THAT WILL REVEAL WHO HAS GUESSED CORRECTLY! Here's graphic #6. Good luck! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! We are on THE LAST DAY of a guessing game! Find a hidden letter in our posted graphics. Four were posted over the last two days, and this is the fifth. Once you have all the letters, unscramble them to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting two more today, AND WILL REVEAL THE LOCATION IN A VIDEO POSTED THIS AFTERNOON! Here's graphic #5. Good luck! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! We are on day two of a guessing game! Find a hidden letter in our posted graphics. Two were posted yesterday, one earlier today, and this is the fourth. Once you have all the letters, unscramble them to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting the last three tomorrow. Here's graphic #4. Good luck! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! We are on day two of a guessing game! Find a hidden letter in our posted graphics. Two were posted yesterday, and this is the third. Once you have all the letters, unscramble them to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting one more time today, and three times tomorrow. Here's graphic #3. Good luck! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! For the next three days, let's play a guessing game. Find a hidden letter in our posted graphics. After collecting all the letters, figure out the order to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting these a few times a day for the next three days. Here's graphic #2. Good luck! #PSCaware #PSCPartners2024
GUESS THE LOCATION OF OUR CONFERENCE! For the next three days, let's play a guessing game. Find a hidden letter in our posted graphics. After collecting all the letters, figure out the order to discover the location of the 2024 PSC Partners Annual Conference, October 18-20, 2024. We'll be posting these a few times a day for the next three days. Here's graphic #1. Good luck! #PSCaware #PSCPartners2024
*7 Years* 🚨do not scroll if icked about medical things🚨 ✨ What a spot to be celebrating my 7th Liversary in Barbados. As the years go by - even with the roller coaster of post-transplant life - I realize more and more that as much as I loathe PSC and the need for transplant, I would not exchange my journey for anything in the world. ✨ First of all, it showed me just how heroic and transcendent people can be. Nyssa selflessly and bravely risked her life to save mine. Every second I’ve experienced in the last seven years is thanks to her gift. She is a living demonstration of what all of us have the potential to be. ✨ Then there is the joy in the people who showed up for me, like my friends Lara and Helen flying in from London, England and California as soon as Franck called them so they could be there when I woke up. So many wonderful people had my back and were sources of enormous strength, powerful vibes, and generosity. I could FEEL them holding me up like a beautiful invisible net in my weakest moments. ✨ Then there was those moments that I can only comprehend as nirvana / cosmic understanding / oneness with the universe just before I was put under. That experience has forever changed me and my priorities. I don’t try to shove what I understood in that moment down people’s throats like I used to (sorry about that guys) because we are all walking different paths in this life, but I am so grateful to have been given that gift too. It informs my choices every day. ✨ I woke up to a congratulations text from my transplant twin Nate this morning, then one from Nyssa shortly after. What a magical journey I am on in so many ways. Grateful, grateful, grateful.
This virtual peer-to-peer support group is for teens ages 13-18. It's a great way to talk with others who truly understand what you are going through. Plus, you can meet friends before our upcoming Annual Conference! Pre-registration is needed. CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. #PSCaware
EVENT OF INTEREST TO OUR #PSC COMMUNITY! The symposium will be held at the Cincinnati Children's Hospital Medical Center followed by a celebratory reception at a local museum. This event is organized by the Center for Autoimmune Liver Disease (CALD), and the Autoimmune Liver Disease Network for Kids (A-Link). FOR MORE INFO, CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE.. Reach out to [email protected] for questions! #PSCaware
THIS SUPPORT GROUP IS TOMORROW! This virtual support group is for those who are living with the loss of someone with PSC. You will find understanding, compassion, and lots more at this Zoom gathering. Registration need. CLICK WEBLINK IN BIO AND EVENTS TAB ON HOMEPAGE. #PSCaware
Today is International Women's Day. Did you know that PSC Partners was started by a woman? Yep! Ricky Safer, our founder and CEO, started PSC Partners Seeking a Cure in 2005, a couple of years after her #PSC diagnosis. Check out the story by CLICKING ON THE WEBLINK IN BIO AND ABOUT US SECTION ON THE HOMEPAGE. #PSCaware
ERCP -- Endoscopic Retrograde Cholangiopancreatography (ERCP) is a medical procedure that can diagnose and treat diseases of the biliary tract, liver, pancreas, and gallbladder. ERCP involves passing an endoscope through the mouth and stomach and into the small intestine. Learn about addition commonly used #PSC phrases on our website. #PSCaware
Today is Rare Disease Day. A year ago, I was diagnosed with Primary Sclerosing Cholongitis. It’s a rare liver disease that attacks the bile ducts. Only 7 people per million are diagnosed each year. I didn’t realize how rare it was until I started doing research. The only treatment is a liver transplant. A year later, I still know very little, but I am so thankful for the people in my corner. God always knows the people you need to support you and pray for you when life is rocky. I’m so thankful for God and my people. They truly hold me together. 💜 #RareDiseaseDay #PSCaware
Today is Rare Disease Day, which falls on the rarest day of the year, February 29th. Today we recognize everyone in the rare disease community, including myself. In 2022, I was diagnosed with Primary Sclerosing Cholangitis (PSC), which impacts 1 in 10,000 people. The reason for my post is not to gain your sympathies, but to get your support when I participate in a fundraiser for PSC in a few months to raise money for research. The more we speak up, the faster we create hope through diagnosis, research, treatment, and someday a cure. Learn more about PSC at PSCPartners.org #rarediseaseday #pscaware #pscpartners
Today I’m showing my stripes in support of Rare Disease Day. I’m honouring those living with PSC, and any of my friends and family who are living with or caring for someone with a rare disease. Rare Disease Day was created in 2008 and is patient led. It is observed every year on February 28 (or 29 in leap years) - the rarest day of the year. Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. #RareDiseaseDay #PSCaware #primarysclerosingcholangitis #PSC #PSCPartners #liverdisease #autoimmunedisease @pscpartnerscanada @psc.partners @pscsupportuk @psc_warriors @pscsupportau #transplant #showyourstripes #organdonation
Hello, all. Rare Revolution Magazine is offering a chance to be part of a rare movie. See the screenshot of their message. #RareDiseaseDay #PSCaware @rarerevolutionmagazine
Today and every day, we stand with the more than 300 million people across the globe who have a rare disease! #PSCaware #RareDiseaseDay #ShowYourStripes
#RareDiseaseDay2024 #RareDisease #RareDiseaseMonth Acylic painting 🖼 🎨 "The zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct." ~National Organization for Rare Disorders Day!! I represent #PSCpartners.org, a rare liver disease that attacks the bileducts of the liver shown in my painting. Show Your Stripes for 1 in 10 Americans with a rare disease! #ShowYourStrips #PSCaware #PSC #Genetics #GeneticCounselor #FamilyHistory #RareDiseaseAwareness #RareCondition #CareForRare #HopeForCure #UnityInRareness #InvisibleIllness #AcrylicPaint #SoftPastels #FoamFiller #String #SmallCanvas
February 29th Is Rare Disease Day! ◽Today and every day I support the 300 million people living with one of the 7,000 rare diseases, including one in 10,000 with PSC, a rare liver disease that affects the bile ducts. ◽One thing I'd like you to know about #PSC is that jaundice is a common symptom; it causes yellowing of the skin and eyes due to liver malfunction. ◽Get #PSC info at PSCPartners.org #PSCaware #RareDiseaseDay #ShowYourStripes 🦓 #PSCWarrior #LiverTransplantSurvivor #WearingMyTruth
Rare Disease Day is tomorrow. There are easy ways to get involved. #PSCaware #RareDiseaseDay #ShowYourStripes
Tomorrow is Rare Disease Day so get out your stripes and show your colours to raise awareness for rare diseases! #RareDiseaseDay #PSCaware #PSCPartners #primarysclerosingcholangitis #PSC #liverdisease #ShowYourStripes #showyourcolours #ShowYourColors
Tomorrow is #RareDiseaseDay. Here are some ways to get involved. #PSCaware #ShowYourStripes #RareDiseaseDay
February 29th is Rare Disease Day, the official international awareness-raising campaign for rare diseases. The goal of this campaign is to increase awareness about rare diseases. February 29th is a day to celebrate the uniqueness of being rare so show your stripes and your colours, share on social media, with friends and family, use the hashtag "RareDiseaseDay" and tag us too! #celebraterare #RareDiseaseDay #PSCaware #PSC #primarysclerosingcholangitis #PSCPartners #liverdisease #showyourcolours #ShowYourStripes #ShowYourColors
Check out our most recent episode of our Living with #PSC podcast. CLICK WEB LINK IN BIO AND THE PODCAST LINK AT THE BOTTOM OF THE HOMEPAGE. Host Niall McKay talks with Dr. David Goldberg, Transplant Hepatologist and Associate Professor of Medicine in the Division of Digestive Health and Liver Disease at the University of Miami Miller School of Medicine. #PSCaware
Today was the first meeting of the year for #PSC groups from around the world. We're excited to collaborate with all of these amazing organizations and others who will be at future meetings. Together, we are creating a world where a PSC diagnosis comes with a cure. #PSCaware @elpa.eu @PSCPartnersCanada