PSC partners seeking a Cure

The mission of PSC Partners 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.

Testimonials

"PSC Partners has been my lifeline ever since my child was diagnosed with this frightening chronic, and progressive disease that mystifies even the best of doctors. When an uncommon new symptom occurs, I share my concerns with the PSC Partners online support group, and at all times, a few people who have experienced the same symptoms come to my help. I feel empowered with the knowledge this organization provides me through the conferences, support groups, and newsletters. I attend every annual conference because these have become family reunions for me. These conferences take place all over the US in PSC research centers. I learn about new research and always leave hopeful that we are closer to having treatments for my child. I am forever grateful to PSC Partners."

"Without the PSC Partners Patient Registry we would have experienced a significantly longer timeline to find, screen and recruit PSC patients. The registry, and the people who join the registry, provide a very vital assistance to researchers like ourselves." Researcher

"I was diagnosed with PSC in March 2012. My GI doc told me I had the disease, said there wasn't anything he could do to help me but he would try to follow up with me and sent me on my way. With a million questions in my mind, I searched the Internet and found PSC Partners Seeking a Cure. My first post was answered in hours by two very knowledgeable fellow PSCers who made me feel welcome and helped me feel not quite so lost in this new world. Without this organization I would still be floundering in acronyms, untruths and fear. I am still looking for a doctor but will have to travel to even find a hepatologist. As of now, I still haven't met anyone who knows of this disease or that has it so I am really looking forward to attending one of their conferences. PSC Partners is a daily stop for me in Facebook. I feel like I have a home there where everyone knows my disease. :) I can't imagine how I would feel if I hadn't found this organization. One of these days I will meet the faces behind the names and I know they will be instant friends."

"When I was first diagnosed with PSC, I felt all alone in the world. I had a rare disease that very few of my doctors had even heard about, let alone seen. It was scary and some of the information out there on the web just made things worse. Then, I found PSC Partners Seeking a Cure and things started to turn around. Along with a great catalog of information, here were real, live people I could communicate with, ask questions of, and relate to. We share ideas, treatments, and frustrations. We discuss the newest findings in the field and we share what does and doesn't work for us, and our loved ones. I still have PSC, but it doesn't have me. Thanks to PSC Partners Seeking a Cure, I no longer feel isolated and I've gained a level of confidence that I, like others, can live with this disease rather than just die from it. PSC Partners has been invaluable in providing information, funding (desperately-needed) research, promoting organ donation and tirelessly finding ways to not only educate and bring awareness to medical professionals and the public, but also to you and me. PSC Partners has taken a world full of people just like me, scared and alone, without answers, and they've formed us into a community, a family, that is there for one another sharing news, stories, and our lives with PSC. One day, hopefully not too far away, some of the puzzle pieces of PSC will click into place. And when it does, there is no doubt in my mind that PSC Partners played a pivotal, monumental role. I want to live. I want my friends to live. I want that day to come when PSC isn't scary and big and without answers. Please, if you can help, help. And to PSC Partners, thank you for all you've done and continue to do. Thank you for giving me the power to fight for my own life and the lives of those I love."

"There was no resource available for PSC where I lived and no support whatsoever. I looked online to find help and found PSC Partners. I wrote to the contact person, the founder of the organization, and received several personal, warm, information-packed messages from her. Those made me feel the presence of a vibrant, proactive and unified community I was eager to explore and be part of. The first of 8 annual conferences I attended took place at the Mayo Clinic in Jacksonville. I couldn't believe the magic that was in the air during the three-day long event. PSC patients, doctors, researchers, caregivers intermingled, excited to be sharing the same mission. That weekend, the discovery that this community would become my family, that I HAD to be a part of this incredible energy, had a life-changing impact on me...