PSC Partners Seeking A Cure

This incredible organization provides access to medical information and peer support which is vital to navigate this complicated disease and to provide hope for a positive outcome.

I was diagnosed with PSC in February of 2023 and was overwhelmed to say the least. The facts online about my disease are terrifying and I felt so alone. Finding this organization-both on social media and their website- was lifesaving for me. I’m no longer feeling alone or overwhelmed. I have a network now and lots of helpful information at my fingertips

It is THE go to resource for those with the disease PSC and coordinating research and national agencies.

The support PSC partners offer is invaluable and immeasurable. PSC partners creates a sense of community that helps caregivers like me and the patients. The online forums and resources that they provide are a lifeline for those in need understanding environment where people can share experiences and information. Also advocacy is another area which has helped PSC patients like my family member immensely.

I was diagnosed with PSC in 2001 and received a lifesaving liver transplant in 2013. PSC Partners Seeking A Cure was a blessing for me. Through this group I was able to meet other people who had this disease and to learn many things about the disease that my doctor didn't talk to me about. Also, they are working hard to find a cure for this disease.

As a parent of a young patient with PSC, I have taken advantage of everything that PSC Partners has to offer its members- from education, resources, peer support and mentorship, to the laughter, camaraderie and hope that is freely offered. This group of dedicated volunteers works tirelessly for its members for the common purpose of pursuing research to find treatments and a cure for PSC. This is a fantastic organization that I am proud to be a part of!

Provides amazing education and social support for my husband, who has PSC, and myself, a PSC caregiver. So glad this organization exists

PSC Partners has really helped me to learn more about the disease and how to support and understand a family member who has been diagnosed with PSC. The support system that can be found within the organization is incredible. They are indomitable advocates for patients and families alike.

You can't find a more dedicated, more caring, more responsible group of patients, caregivers, and advocates for a rare disease condition!

This organization has been a lifesaver! After my husband was diagnosed in 2016, we were lost and knew no one who had been through this. We stumbled upon this organization and soon after went to our first conference. The education, guidance, and support we received through this organization has been incredible. The staff are some of the most dedicated, hardworking, and compassionate people I've ever met.

These folks do an impressive number of things, including patient support, informational webinars, conferences, and research funding. They also sponsor a number of ways for patients and families to connect with others - very important for a rare disease.

Psc partners has been a source of support, information, and validation for my illness. I have gained lifelong friends and supporters from my participation in this nonprofit and I hope it can continue to be as helpful to others as it has been for me.

PSC Partners has been a blessing! I wish they were around when our daughter was diagnosed with PSC 29 years ago at the age of 9. We feel that FINALLY there is an organization that is informative, caring, supportive and most importantly, making a difference in the lives of PSC patients. Their fundraising and connections to the medical community is unparalleled. They are involved with and support the latest research. We have attended conferences enjoyed new information and a amazing support as caregivers. There is an instant bond with the community. As parents, we cannot speak highly enough of PSC partners.

I don't know where I would be without PSC Partners! I feel like there is finally a voice bringing attention to this devastating disease. More importantly, I feel like they are getting people to listen! They have given me hope that the medical community actually cares about this rare disease.
I am so grateful for being given the opportunity to volunteer and speak to the medical community through this organization. For the first time, I feel like I can be part of making a difference in this disease. Thank you for making it so easy to network with other patients and to feel like I am not alone in the fight.
PSC Partners has not only embraced me but my entire family, providing support and information when needed. Thank you.

I was diagnosed at age 3 with PSC. I received a liver transplant when I was 15, and was recently diagnosed with recurrent PSC. PSC is a brutal disease and this nonprofit is helping to fund crucial research in order for us to better understand PSC and develop effective treatments to benefit future PSC patients. Partners Seeking a Cure has always been a wonderful resource for me and family.

PSC Partners provides many extremely needed services for PSC patients, families and caregivers and medical providers-including information, educational webinars and videos, opportunities for research and support services. They exceed my expectations as a non profit organization.

PSC Partners has been a valuable resource for up to date information that even my medical team is not aware of yet, peers to connect with and opportunities to learn about and participate in research. If you or a loved one has PSC, they are a grounding force that lets you know you are not alone in this journey.

PSC Partners was a shining light when we were surrounded by darkness after hearing our son’s diagnosis of this rare liver disease. This organization offers continuous support, whether you are a patient, care giver or anyone involved in the PSC family. PSC Partners continues to be innovators in their outreach as well as funding research to find a treatment and cure for this devastating disease.

Great organization that is well organized and doing so much to help those with PSC

PSC Partners Seeking a Cure has served so many purposes for me. Everything from education and advocacy to peer support and making sure research advances to finding a cure for PSC!

As a patient newly diagnosed with PSC I was surprised to find PSC Partners Seeking A Cure. They have been a great source of knowledge for what is PSC, as well as research studies, that are seeking candidates and research results from past studies. This alone is gold to a PSC patient. A large database for PSC patients who wish to answer survey questions and upload lab results with anonymity assured and support groups for PSC patients and family or caregivers on Social Media sites for networking, or just encouragement from other PSC patients and caregivers. All of this was offered to me for $0 dollars. But please donate if you can. And that is why I give PSC Partners Seeking A Cure 5 stars as a Nonprofit.

PSC Partners was a lifeline for me. When you have a rare disease, and no one around you has ever heard of it, it can be very isolating. PSC Partners introduced me to a world-wide community of fellow patients, offering support and a tremendous amount of valuable information. Through their efforts, they've raised awareness of PSC and millions of dollars to fund PSC research grants, in hopes of find better treatments, and eventually a cure.

A great resource and community for all those affected by PSC!

My brother is a PSCer. PSC Partners Seeking a Cure provided my family with a wealth of information and support during his illness through transplant and beyond.

Fantasic repository of information, awesome and inspiring events, and super helfpul staff.

In 2007 I was diagnosed with PSC and after the shock of the doctor telling me and my husband that my future would either be death or transplant, I was desperate to find information concerning my rare disease. I found PSC Partners Seeking A Cure. The website is very informative and held a lot of hope for us. Since then, I have received my life saving liver transplant and still got to the website and read about new advances, training, helpful information on so many things that we went through during that journey. Because I still have Ulcerative Colitis I have a chance to get PSC again. If that does happen, I know that this wonderful group of people, patients, caregivers, doctors and hospitals who contribute to helping all of us, will still be here.

PSC Partners provides helpful resources, events, and community for PSC Patients.

This is an amazing organization for support and vital information. When it appears that no one knows about PSC, a bright light shines and this organization gives ample amount of valid information about the disease.

I get lots of relevant information in regards to PSC. Their educational tools and meetings are helpful to stay current on research.

A family friend has PSC. I am very impressed with the enthusiasm and effort that people involved with this non profit make to educate others about this disease.

PSC Partners does a great job supporting those with this rare liver disease. By contributing you are helping fund research and education for a disease that currently has an unknown cause and very little medication options to stop its progression. Many patients only hope is to receive a liver transplant. PSC partners provides hope and education to those who may otherwise feel alone in their struggles. Thank you for your support.

PSC Partners provides an unbelievable amount of resources and support to its patients and families. They are proactive in seeking out the best medical researchers to work toward treatments. The diagnosis feels scary and lonely and they support families through that time.

Truly a lifesaver for those of us with this rare disease. Can’t say enough good things about them.

Everyone on the board and every volunteer I met was super motivated to find a cure for PSC. They are a highly enthusiastic and positive group. They've given millions of dollars to research while carefully choosing which research to support.

A charity you can trust that supports the agenda of finding a treatment and cure for PSC. The charity is disease specific for those of us who have/had Primary Sclerosing Cholangitis. The best resource for those afflicted to date.

We found PSC Partners Seeking a Cure in 2015 when our then 10 year-old son was diagnosed with PSC. We had feared the worse when our vibrant, gregarious, fun loving son - began to appear pale and gaunt and became withdrawn and unable to keep anything down. We were fortunate, our astute pediatrician was quick to identify and refer us to the pediatric GI. I remember our sense of relief when we heard what it wasn’t and then our sense of grief as we began to educate ourselves and realize what it was.

We initiated frantic internet searches to understand what this was, was there a cure? Was there a treatment? Would the medications be more harmful than the disease? Was this actually a better fate than the one we had feared?

As our appetite for knowledge broadened our search scope narrowed which brought us to PSC Partners. The first glimmer of hope in what seamed like an eternity of despair.

They didn’t offer a cure - there is none - they offered information and support, they shared resources and experiences, they offered a community and hope.

We attended our first PSC Partners Conference for my sons 13th birthday - and we’ve attended every one since. I remember how over joyed I was to see young adults there - living (not dying) with PSC - they graciously allowed me to pepper them with questions and answered every one - no matter how personal.

On the last day I was astonished to see my 13 year-old son stand up in front of hundreds of people and bring the to laughter and tears as he described the shared experiences of his group. There was that vibrant, gregarious, fun loving kid - in that moment he was in HIS community...and we are so glad to have found it.

An absolute lifesaver for patients an families to stay updated and navigate all the directions this disease can take!

This is a fantastic, patient-focused, and patient-driven nonprofit. From the top down, the organization dedicates itself to supporting PSCers, driving research, and building a patient registry. The progress thus far—funding millions in research and raising awareness—is astounding, and the momentum is only increasing!

My son had PSC and PSC Partners were a huge help with information, support and love. I don’t know what we would have done without them. They all family now.
PSC Partners Seeking a Cure is the best run nonprofit with a small staff and incredible volunteers so monies raised can go to much-needed research. They are tireless advocates working to find a cure.

My family found this nonprofit just a month after our 12 year old son was diagnosed with PSC. We were lost, terrified, and lacking in a working knowledge of the disease and a support system for our journey with it. We gained knowledge, support, and a balance to our fears through this organization, its leader & members, and the conference held just 2 months later... which we flew out to attend. The conferences are phenomenal. The people behind this organization give their hearts to it and to all who are helped by it.

My daughter was diagnosed with PSC in 2009 when she was just 18 years old. She was hesitant to come to the 2009 conference. As we were leaving she made a statement (not a question) that we were coming back the next year. And we have been back each year. She and I and my spouse, found friends and support as well as incredible information and hope from the members, presenters, organizers, volunteers, etc.

I have PSC and this team of wonderful people help me to understand everything about it

Immense support and information helped me navigate through such a rare disease. The difference PSC partners made in my life is immeasurable.

I was diagnosed with PSC in 2014 the website provided me with helpful information and links. Being knowledgeable really helps in conversations with my doctor. It is a great tool for patients and caregivers.

I had no idea where to turn when diagnosed 9 years ago. Terrified and hopeless, members immediately tried to calm my mind with personal stories and real statistics and facts about PSC. I will forever be a member of the PSC family.

A wonderful source of advice and support which has helped me through some very difficult times with a PSC. They work tirelessly in disseminating research results, raising money for new research and building a supportive and well informed community.

When I was first diagnosed with PSC, I didn’t know what to do, how to feel, where to turn. Luckily, I had an amazing HCP who referred me. PSC Partners Seeking a Cure has been a godsend! The wealth of information is amazing. Anytime, I have questions about my disease, I’m able to go line and research and will usually find the answer or see where someone else has asked a similar question and received multiple responses!

PSC Partners has provided me with information, education and comfort on my PSC journey. They are an extremely compassionate and hard working team and put the needs of their members first and foremost.
They strive towards advancement in research for a treatment and ultimately a cure. They travel the world to bring awareness about this difficult disease.

The people who run this nonprofit leave no room for doubt. They raise money to fight Primary Sclerosing Cholangitis and collect and disseminate information about it from and to patients, doctors, and researchers. It is a very lean organization with a narrow focus and has been effective, using the money they raise to kick-start research on various aspects of the disease.

Wonderful place for information and to feel part of a community. Our son was diagnosed at age 7 and we’ve learned so much from this group. Hoping for a cure ������������

My husband was recently diagnosed with PSC, and PSC Partners Seeking a Cure has been a wonderful place to get accurate information and support!

The first place we were able to find any in depth explanation of PSC once our daughter was diagnosed. Then it became clear that this organization was much more than an information group. It is a support group for those living with PSC and their caregivers. It has become the guide for all things that surround the illness for all those affected. Research, information, funding, conferences bringing the world foremost experts in the field from around the world. A sense of belonging, a sense of hope, a sense of true organizational leadership. We are in Canada and have felt, witnessed and been part of, the overwhelming support for anyone suffering from this rare disease by this single organization. We are forever grateful and humbled by the generosity of its members. Can not say enough but we will try! Thank you PSC Seeking Cure both US and Canada for making this journey with us and for being there in every way possible. A cure is coming!

PSC Partners is an unbelievable organization that helped me connect with other PSCers and is doing great things to advance research to find a cure for this liver disease. It's so great to know I'm not alone in this journey.

When my son was diagnosed with PSC last year, I wanted to find as much information as possible. PSC Partners has been a wealth of up to date information. Their website, facebook page, yearly conference, commitment to research, podcasts/blogs, and newsletter have given me much needed guidance for what is a rare currently non curable disease. I was also through their organization able to be paired with a mentor who has given me guidance and encouragement when I was feeling very overwhelmed. Thank you PSC Partners for all that you do!

When my husband was first diagnosed with PSC, there was very little information out there. PSC Partners' website gave us clear, concise information. Through their yearly conventions, we connected with others with PSC and gained, not only a support group, but new friends. Friends who understand the disease and life with the disease.

I became involved with PSC Partners 7 years ago when I attended their very informative annual conference. I then raised money by running a half marathon and asking for donations. With PSC Partners, I feel confident that my efforts result directly in additional funding for promising research projects to find cures.

PSC Partners Seeking a Cure has done a great of job of raising awareness for my son's rare liver disease. It is also a great place for me to learn and get more knowledge.

Having been an RN for 15 years before PSC diagnosis, I had never heard of PSC. Thankfully, PSC Partners was there with information and fellowship. So much that is found on line for this disease looks like a death sentence. And no one you know when your diagnosed has this illness. The conferences and connections made, along with a wealth of information that the website provides, helps to save your sanity. I can't thank PSC Partners enough for what they have provided me and my family.

They are the most encouraging, helpful and loving people in my life. I thank God for all the ongoing support I receive from them.

I don’t think I could have gotten through the past 14 years without PSC Partners. From the moment I attended their first conference I knew I would always be a part of them and support them in any way possible.

I've been connected with others who understand my situation and that takes some of the fear away.

When I was first diagnosed with PSC, this nonprofit really helped me learn about the disease, answered many questions, and gave me an idea of what I should be doing to stay healthy as long as I could. It was, and is, an invaluable resource to my friends and family by providing lots of information of all sorts- from how to be an effective advocate, to how to deal with the stress of caregiving, and how to maintain a sense of calm and hope when confronted by a devastating diagnosis. My husband and I have gone to several of the PSC conferences, and were overwhelmed by the comraderie, kindness, and information presented. In addition, I participate in the online closed Facebook group, which is a great source of information and personal stories. I was inspired to participate in two clinical trials because of PSC Partners, and their unwavering commitment to finding a cure has been awe-inspiring. BecUse of them, we now have a patient registry, a code just for PSC, and the attention of providers across the country, including one of my own doctors who mentioned not long ago how impressive they were as a group at a conference he had attended. In almost 12 years of illness I have watched PSC Partners become an excellent example of what a focused, determined non-profit can achieve and I am grateful every day for their hard work and support for patients and families....”whatever it takes”.

PSC Partners is an excellent group. They are highly professional and provide only accurate, well researched and documented information. The staff are intelligent and, importantly, caring. Most have had their lives touched by PSC, through a loved one or in some cases through themselves. I've been exposed to a variety of non-profits at both a national and local level, and PSC Partners are truly top-notch. Not only do they help patients and support family members of those with the disease, educating and providing excellent resources so people can understand this disease and get proper treatment, they help further research into its cure and best treatment options. It's not easy to have a very serious disease, much less a rare one, and the fact that PSC Partners, such a great organization and resource, exists makes the journey of having this disease so much better.

PSC Partners Seeking A Cure was a safe place for me to turn to after my diagnosis when I was just 18 years old. I had never heard of PSC but after one Facebook search I found the PSC community that would later become my family. PSC Partners Seeking A Cure is an organization that fights to bring people together and to find a cure for PSC.

This has been a godsend for me being newly diagnosed.

They provide so much valuable information and resources for people diagnosed with PSC and more importantly PSC caregivers. The conferences are exceptionally done and so beneficial. The Facebook page is a wonderful place for people to ask questions, get answers, and post in a safe place about this frustrating and awful disease.

PSC is a very rare disease, effecting less than 1 in 100,000 individuals. As such, it receives minimal attention from researchers and drug companies. PSC Partners Seeking a Cure supports those afflicted with PSC and their caregivers. It also plays an important role in creating awareness, educating the public and funding research to find a cure from this devastating disease.

PSC Partners is a wonderful nonprofit which educates and supports not only the people suffering from this horrible disease but also their families and friends. Besides raising public awareness, PSC Partners raises money for research in the field. As is the case in most rare diseases, PSC research depends heavily on private donations and fundraisers. The staff of PSC Partners is an amazing and dedicated group of people most of whom donate their time, energy, and expertise to support others and help them learn about the disease and how to best navigate the medical system to deal with their illness. The annual PSC Partners Conference features experts in their field to educate and advocate for all those suffering from this terrible disease. It is the most organized and helpful conference I have ever attended. PSC Partners is the perfect example of what a nonprofit should be.

I am a fellow PSC Patient whose really declinced since 2014 since having reoccurring cholangitis 2/3 of each yeat since 2016 after developing an ESBL rare resistant gram neg super bacteria in my livers bile ducts.They have kept me educated, have taught me to advocate and are another family to me who has helped me through the worst of times. Without them, I cant say Id still be here. I know I wouldnt.

Just amazing! So effective & helpful! They are a saving grace for us PSCers - giving is community, information, and hope.

Amazing support group, we all become family. I joined in 2008 and was transplanted in 2012 and I'm still here to support others because i believe in this organization's focus and dedication to a cure. Patients united in a patient focused registry.

I joined as someone having PSC, I'm glad I joined, as the information they have is very interesting and the amount of people it affects is amazing!it's good to have a place to talk to others about PSC. I hope they find a cure one day, cause transplants are not fun.

When we found out ,y husband has Psc, they gave us information, hope and a place to call home

They have helped me deal with such a terrible diagnosis. I have been able to get the help I needed, and I am now on my way to reversing the disease! I could not have done that without them!

The information and support that PSC patients, their families, and friends receive from this non profit is amazing! There is no shortage of support or information given by this group. It's nice to know there is always somewhere to turn to when you think you are alone in this fight for your life.

My son was diagnosed with PSC a couple of years ago and was transplanted earlier this year. PSC Partners has provided immeasurable support throughout this ordeal. A great group of people and organization.

PSC Partners is an amazing organization and has helped my family and I in so many ways! I have gone to 9 conferences and have learned so much about PSC and being post transplant and the risks of PSC returning. I have gained a family through PSC and the support that I have received has blessed me. I highly recommend PSC Partners and the annual conference to everyone! PSC Partners is definitely worth more than 5 starts.

Since being diagnosed with PSC (a rare auto immune disease which attacks the bile ducts in the liver) three years ago, PSC Partners has become a part of my family. I know I can turn to them with questions or the need for support and the members are there! Research into the causes and (hopefully one day ) to find a cure are funded through this non-profit group. We need to find a cure!

My life would be filled with anxiety, depression and hopelessness if it was not for PSC Partners Seeking a Cure. I have met so many wonderful people, learned so much about my disease and symptoms, feel hope due to PSC Partners Seeking a Cure's fund raising and research supporting grants and have become part of a community of other PSCr's and caregivers that support one another each and every day. If you have PSC, and I hope you don't, you should be part of this organization. If you have PSC you should take part in our patient registry which will help speed up drug studies, quickening our time to a viable medicine to slow or even halt our disease. Without PSC Partners, this registry would not exist. I have been to all but one of our conferences and come away with renewed hope and a commitment to my PSC friends to be there for them.

When my son was diagnosed with PSC I was devastated. PSC Partners was there with information, and encouragement.

My husband was diagnosed over 5 years ago with this rare disease. PSC Partners has been more than a great organization, they are family. The endless amount of work they put into finding a cure is more than amazing! The conference each year comes and goes too fast! They put together such an informative platform and spread such a wealth of knowledge of this horrible disease.

My daughter was diagnosed with PSC in 1998 when she was 16 years old. She was seen at Riley Hospital for Children in Indianapolis until she was 18, then by a local gastroenterologist for the next 5 years. Although she was not having symptoms from the PSC, we took her to the Mayo Clinic in Rochester, MN for a work-up. There she saw Dr. Lindor and Andrea Gossard, NP. She is now seen at the Cleveland Clinic. I give this history of the places where she was treated to say that she got very, very good care. We learned a lot. However, until my daughter & her husband and then her father and I were put in touch with PSC Partners Seeking a Cure, our education and support outside of a medical facility was pretty much zero. Now, we have been to 2 conferences on PSC where we have learned what the latest research is, we have met others fighting the same battles, and have a supportive community that we can reach out to if we need them. I can not say enough positive things about this group of people.

This organization is truly a lifesaver for those affected by the rare disease primary sclerosing cholangitis. From support, to education, to funding for research and advocacy, this is an impactful organization.

This organization and the work they are doing has been such a blessing to my family. Navigating the world of rare diseases is a tough one and not for the faint of heart. This organization takes that challenge head on and strives to support the community of people who suffer from this disease. They are striving to find a cure for PSC and have been successful in achieving worldwide recognition for the work they are doing. I could not be happier to give my full support!

PSC Partners Seeking a Cure (PSCP) serves as a voice for those impacted by primary sclerosing cholangitis (PSC). PSC is a rare liver disease unfamiliar to many medical practitioners. There is no known cause, effective treatment or cure for PSC. Among those impacted are persons with the disease, their family, caregivers and others. Historically, there was little viable information. Into this void, the non-profit entity PSC Partners Seeking a Cure (PSCP) was established (2005). PSCP has made, and continues to make significant contributions in a multi-faceted manner. Three examples are offered.

A main focus is to provide education and support services to those affected. Support groups were established – open and closed – and today these now have more than 5,000 participants. Our daughter Sandi once described PSC Partners as taking “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.”

A second example is raising research funds for, and awareness of, this insidious disease. Since the 2009 inception of its grants program, PSCP has awarded over $3 million dollars. But it is more than the grant funds. PSC Partners has been, and continues to be a voice to inform researchers of the conditions that adversely affect those with PSC, and the desire to find effective treatments for those conditions. One example is to address the uncontrollable itching that has been described as having fire ants in your blood. To help the research process, PSC Partners, in collaboration with the NIH Office of Rare Disease Research (ORDR), established a PSC Partners Patient Registry. The Registry stores information about those affected by this disease, including such areas as family history, quality of life, and patient demographics. Because primary sclerosing cholangitis is a rare disease, the registry serves as a method to track disease progression and to allow the opportunity for patient participation in research endeavors.

A third example is the annual PSC Partners annual conferences, held in conjunction with a major medical center. The conference has multiple functions – it allows patient and caregiver interactions, and can serve as the first time one person with PSC (or caregiver) has met another person with PSC (or caregiver). It also provides both formal and informal opportunity for information sharing between and among researchers and those affected.

Although my daughter did not survive, my family and I are forever grateful for the role PSC Partners had in our dealing with this disease. It allows us, and continues to allow others, to realize that we are not alone, and as PSC Partners says, and consistently shows, “together in the fight, whatever it takes.”

My son was diagnosed with PSC (Primary Sclerosing Cholangitis) and Ulcerative Colitis in 2005. As I was struggling with my 15 year old having these two serious illnesses, my husband found PSC Partners on-line. Their annual conference was two weeks away. I immediately registered and it was one of the best things I have ever done. I traveled 3,000 miles to attend this conference, entering as an anxious mother and leaving with excellent information given by medical specialists dealing with both of these illnesses and having the support and newly formed friendships of PSC patients, caregivers and families who attended the conference. I left feeling like I had met my second family.

I began volunteering with PSC Partners about a year later and continue to love volunteering for this wonderful organization. The goals of PSC Partners are to provide support to patients and caregivers, to educate about PSC including the PSC Annual Conference, and to promote and fund research for this chronic, progressive illness which has no treatments and no cure.

The support PSC Partners provides through the on-line support groups, the mentor/mentee program, and individual support is amazing and has participants from around the world. The annual conference occurs at a university setting with world class hepatologists and other physicians and medical providers. For the last six years I have had the privilege of coordinating volunteers for our annual conferences. These dedicated PSC volunteers include patients, caregivers, family and friends who help make the annual conference meaningful to both new and returning attendees, all the while fostering a caring, family atmosphere.

Two other key aspects of PSC Partners are linked by the need for more PSC research. Since this illness has no cure, the need for research is of vital importance. PSC Partners promotes research and has an excellent scientific medical advisory committee. Fundraising for research is a key goal and PSC Partners has an active grant-funding program. It is so exciting to see the growth of PSC research!

The PSC Partners Patient Registry is a patient-driven registry to collect data about PSC and how the disease affects individuals. The confidential, private data can be used for research and clinical trials to help find treatments and a cure for PSC. As more PSC patients join the registry, the registry becomes more and more important to researchers.

PSC Partners is an important part of my families life. It is a great organization which I highly recommend and support.

PSC Partners is the backbone of our PSC family. Because of them, I have connected with hundreds of other PSCers and family members who share the same struggles. They push life saving research forward and give me hope everyday that we will find a cure.

This non-profit works extremely hard for PSC patients. They are constantly bringing awareness of this rare disease to patients, healthcare providers, pharmaceutical companies and the general public. They provide research grants every year to pursue treatments and a cure. Their annual conference provides patients and caregivers with educational information and support. I know the support they have provided me is immeasurable.

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.

Five years ago, I didn’t know where to turn to. 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 five 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. And since then, through the years, my PSC family has grown, and so have my roots and my involvement in this committed and amazing group. Eight years, eight conferences in important medical centers throughout the US, a widening circle of PSC families and medical thought leaders, and still, PSC Partners continues to be a close family while it spreads its magic. That PSC Partners, representing an obscure rare disease, could move PSC research forward, could give support to so many, and could build such a strong network is a beautiful example of the power of the human spirit, seen at its very best. For these reasons, I wholeheartedly support PSC Partners, its mission and its vision in every way I can.

I learned of PSC Partners Seeking a Cure through my son, who has PSC. Because of his involvement, I have learned more about the organization and have assisted in some fund-raising. I am especially impressed with the high level of integrity within the organization and the focus on using volunteers so most of the money contributed can go to research and education, as well as support for patients, families and caregivers. I have attended two of the national events sponsored by this organization - - in California and in Minnesota - - and each was inspiring and educational. The organization has grown quickly and is reaching out in new and innovative ways.

I learned of PSC Partners just a few years ago and was warmly welcomed by this wonderful group of people. I'm a long-term patient with PSC and now I'm a volunteer for the organization. I am simply amazed at the achievements of this organization. They are drawing very meaningful attention to this rare, poorly understood disease so that the scientific community is competing to develop high quality research programs that will benefit not only patients with this disease, but many others with related illnesses. They combine scientifically well informed research funding initiative with high quality education and support for patients, caregivers, and healthcare providers trying to understand this unpredictable illness. The leadership is superb and its nearly all volunteer staff ensures that a very high percentage of the funds raised go directly to support the organizations mission! I plan on being involved for the rest of my life and hope to attend every one of its annual conventions.