From one patient’s diagnosis to a global movement, we are united in our pursuit of a cure.

Our Mission

The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC) while providing education and support for those impacted by this rare disease.

Patients Connected

Years of Impact

Research Projects Supported

Founded in 2005, PSC Partners Seeking a Cure is a 501(c)(3) nonprofit organization.

Our programs support patients, caregivers, families, and friends, educate the medical community about this rare liver disease, and encourage groundbreaking research in the search for treatments.

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Our Story

2003

The Beginning

A PSC diagnosis left Ricky Safer feeling isolated and uncertain. After connecting with others living with PSC and realizing they shared the same fears and lack of support and education, Ricky and her family decided that they could do something to make life better for PSCers and stimulate research to find that elusive cure for PSC.

“Ricky, you have PSC… We can try to continue treating the symptoms, but there is no cure.”

Like all my fellow PSCers, this diagnosis threw me into an emotional tailspin. I was suddenly dealing with anxiety, fear of the unknown, and anger. I craved two things: more accurate information and the support of others who understood.
2005

PSC Partners is Born

PSC Partners Seeking a Cure officially launched in January 2005 and held its first conference, bringing together 84 enthusiastic supporters.
2007

Scientific Medical Advisory Committee Established

Members were invited to join the SMAC committee based on their expertise in the field, with the goal of helping guide PSC research toward new treatments and ultimately a cure. Committee members also provide critical evaluation of research grant applications by assessing their scientific strengths and potential limitations.

“Together, we are creating a world where a PSC diagnosis comes with a cure! With enthusiastic participation, PSC research can only flourish.”

Rachel Gomel, Senior Advisor and Creator, PSC Partners Patient Registry
2014

Launch of the Patient Registry

The PSC Partners Patient Registry was established in 2014 to address the challenges of identifying PSC patients and accessing meaningful PSC data. Its mission was to strengthen patient representation and amplify the patient voice in advancing PSC research.
2018

A Breakthrough in PSC Disease Classification

In 2018, PSC Partners played a key role in securing a disease-specific ICD code for primary sclerosing cholangitis (PSC), K83.01. Establishing this dedicated code improved the ability to accurately identify PSC patients for clinical trials and enabled more robust epidemiological and natural history research.
Jan 2025

Leading the Way to a Cure

Since 2007, PSC Partners has awarded over $5 million for groundbreaking research.

117

Grants Awarded

1

Shared Goal

$5.15 M

Funded

A Growing Movement Worldwide

Today, PSC Partners Seeking a Cure continually expands our programs, thanks to the expertise of our board, Scientific/Medical Advisory Committee (SMAC), and our amazing community.

We remain a true working partnership between patients, caregivers, and medical professionals. Together, we act as a family for PSCers and offer hope to all of us.

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