Thank you very much to everyone who contributed to our recent End-of-Year campaign, including the anonymous donor who matched the first $10,000! Your generous donations are instrumental in our goals to find treatments and a cure for PSC while providing education and support to those impacted by this rare disease. We can't do it without you, and we are very grateful to have your confidence and support. If you'd like to get a jump on your 2024 giving, please click HERE.

Patients, their families, clinicians, and scientists gathered recently for an important discussion about PSC. The PSC Partners Seeking a Cure What the Cell?! patient event took place on October 14 and 15, 2023, at the Arts & Letters Club in Toronto, Canada. This event brought together all the stakeholders involved in the Chan Zuckerburg Initiative (CZI)-funded Patient-Partnered Collaborations (PPC) project focused on transcriptomically and functionally characterizing pediatric PSC.

Click HERE to view a news release about this event. To watch recordings of the sessions, click HERE or the button below to visit the PSC Partners Canada YouTube page.

Regardez les vidéos des sessions sur la chaîne YouTube de PSC Partners Canada: https://www.youtube.com/@pscpartnerscanada8800/playlists

In episode 41 of the Living with PSC Podcast, Host Niall McKay talked with Dr. Stephen Rossi, Chief Scientific Officer for PSC Partners. In addition to Dr. Rossi's background, the two discussed PSC Partners research priorities and the progress of work being done worldwide to find treatments and a cure for PSC.

In 2023, Dr. Rossi joined the staff of PSC Partners after three decades in the pharmaceutical industry.

"It's exciting to not only take what I've learned on the industry side and the clinical side, but actually work directly with the patient community," said Dr. Rossi. "There's alot of positive things evolving. I'd say, in the next five years, we're going to see a big breakthrough."

During this episode, McKay and Rossi discuss PSC Partners research projects, including:

Click HERE to listen to all Living with PSC Podcast episodes.

We've added lots of happenings to our EVENTS page. Click HERE or the button below to check them out. If you have something to add, send it to contactus@PSCPartners.org. We will review all submissions for interest to our PSC community.

Sandi knew the power of community, and she always wanted those with PSC and their caregivers/families to know they have support and are not alone. The message below is an excerpt from her book Sandi's Journey.

"So, the doc says, 'Surprise, you have PSC. It's this rare, incurable...,' and, well, there were probably more words, but you were too stunned to hear them. Isolation is one the worst parts of having a rare, chronic illness that even doctors have to ask you to repeat the name of, let alone your closest friends and family members. It can be incredibly hard to be the only one in a group with constant itching or the sound of sand running through an hourglass whooshing in your ear. Too many of us feel all alone and are stuck having to wonder if what we go through is normal. Do you know all the facts? What does PSC mean for my life and my future? One of the most amazing things about (being part of PSC Partners) is finding out just how not all alone you are."

Here are some ways to join the PSC community to get the support and answers you desire while also ensuring you are not alone in this journey:

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