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Blog

PSC Partners Seeking a Cure

Blog



22nd of September 2017

Ricky Safer: Reaching a Milestone in Our International PSC Registry

Primary sclerosing cholangitis (PSC) is a rare liver disease affecting the bile ducts inside and outside the liver. As with most rare diseases, it is difficult to conduct large clinical trials that support the development of effective treatments for PSC. In 2014, PSC Partners Seeking a Cure collaborated with the NIH Office of Rare Disease […]


20th of September 2017

2017 RESEARCH GRANT AWARD SPOTLIGHT: KATZMANN, “APICAL AND BASOLATERAL EXOSOME SIGNALING IN NORMAL AND PSC CHOLANGIOCYTES”

Each year, PSC Partners asks research grant awardees to share a lay summary as part of our grant process.  In order to make this information more digestible and shine a light on each individual study, we will share a summary each week (in alphabetical order of the Principal Investigator’s last names).  We welcome your comments […]


2017 RESEARCH GRANT AWARD SPOTLIGHT: GREEN, “THE ROLE OF HEPATIC XBP1 IN CHOLESTATIC LIVER INJURY”

Each year, PSC Partners asks research grant awardees to share a lay summary as part of our grant process.  In order to make this information more digestible and shine a light on each individual study, we will share a summary each week (in alphabetical order of the Principal Investigator’s last names).  We welcome your comments […]


29th of August 2017

Reflections on the Power of PSC Partners Annual Conference

It is difficult to explain how exhausting it is to prepare for our annual conference each year. It is an event with an unimaginable amount of detail requiring a herculean effort from our small team at HQ. As we reflect on the conference, we are energized by the outcome and the equally herculean efforts of […]


18th of August 2017

Q and A with Caregiver and Live Liver Donor Jen Ragaini

          Background Many of you may have already heard Jen and Matt Ragaini’s story – it was featured on the Today Show in April of this year and was picked up by a variety of local news stations before Matt’s transplant to help them get the word out about the need […]


14th of August 2017

Specific Gene Associated with Survival and Need for Transplantation in PSC Patients

In 2014, PSC Partners awarded a grant to Professor RK Weersma and his team from the University Medical Center in Groningen, Netherlands.  The grant was titled, “Unraveling genetics driving PSC subphenotypes: An IPSCSG study”.  As an extension of the work done for this grant, a paper was recently accepted for publication in Gut, a leading […]


9th of August 2017

We Need Your Amazing “Living with PSC” Stories by September 16th

PSCers and their caregivers may not be faster than a speeding bullet or more powerful than a locomotive, but we’re pretty sure we’ve seen some of them leap tall buildings in a single bound! We are looking for stories about the hidden heroes in our community who work tirelessly every day to move our cause for […]


3rd of August 2017

2017 RESEARCH GRANT AWARD SPOTLIGHT: ELLINGHAUS, “IDENTIFICATION OF CONCRETE GENE TARGETS FOR THERAPUETIC INTERVENTION BY CHARACTERIZING EXPRESSIONAL CHANGES IN PRIMARY SCLEROSING CHOLANGITIS AND ULCERATIVE COLITIS”

Each year, PSC Partners asks research grant awardees to share a lay summary as part of our grant process.  In order to make this information more digestible and shine a light on each individual study, we will share a summary each week (in alphabetical order of the Principal Investigator’s last names).  We welcome your comments […]


28th of July 2017

Fred’s Cliff of Insanity: A Hopeful Picture of the Unpredictable Life of a PSCer

  We often see posts in our online PSC groups that highlight the frustrating unpredictability inherent in the lives of PSC patients and caregivers.  Living day to day, knowing that, at any point, the rug could be pulled from under you is hard.  One of our board members recently shared his personal journey of living […]


21st of July 2017

2017 Research Grant Award Spotlight: Deneau, “A Multicenter Collaboration to Study PSC in Children”

Each year, PSC Partners asks research grant awardees to share a lay summary as part of our grant process.  In order to make this information more digestible and shine a light on each individual study, we will share a summary each week (in alphabetical order of the Principal Investigator’s last names).  We welcome your comments […]