This Foundation is amazing! Their patient perspective is a key focal point to ensure our disease state is funded, studied and in search of new treatment options and cures. The community of support here is truly priceless.

They're a fantastic group dedicated to helping others. They encourage research into a rare form of cancer and support doctors, caregivers, and, of course, patients.

Words cannot convey what a source of hope and support the CC Foundation has been to me. The staff, including Melinda Bachini and Patty Maxim, are so positive and caring, not to mention inspiring, and the information available on the CCF website has been very helpful. Plus the annual conference is an amazing opportunity to learn from, and interact with, top experts in the field and to see first-hand how hard people are working to find answers for patients.

I was diagnosed almost three years ago with intrahepatic cholangiocarcinoma. I was stunned, frightened and overwhelmed. Unlike cancers that receive more recognition, cholangiocarcinoma is less known, more rare. Thanks to this amazing foundation, I found education and support and friends. The yearly conference is designed for patients, caregivers and medical professionals. The entire program is available online. The support system of the staff goes over and above expectations. I have worked with nonprofit organizations and the CHOLANGIOCARCINOMA FOUNDATION is exceptional.

Since the death of my husband due to cholangiocarcinoma (bile duct cancer), I have donated to and volunteered for the Cholangiocarcinoma Foundation (CCF). In just a brief amount of time, I have watched this truly outstanding organization become a leading U.S., and increasingly international, resource in research education and public awareness for this deadly disease. Just recently, the CCF announced a new partnership with Komodo Health, a first-of-its kind agreement linking a cancer advocacy group with the leading healthcare analytics and insights delivery company to advance the treatment of cholangiocarcinoma. The agreement allows the Cholangiocarcinoma Foundation to access previously inaccessible information, data, and disease-treatment reference points through Komodo Health’s largest, most actionable healthcare map in the U. S. This initiative is just one example of how the Foundation’s focus on research and collaborative partnerships provides tremendous support and hope for both patients and caregivers!

When my mom was diagnosed in late 2016, I had never heard of such a cancer. It was a definite shock and one feels helpless, not knowing where to turn. The doctors were so negative and emphasized the poor prognosis and the limited treatment options. I was drowning with fear, extreme sadness, and was overwhelmed. I am glad to have found this Foundation and took the step to to join and connect a couple of weeks after diagnosis to learn as much as possible and connect with others going through the same. I am so glad and grateful for the advocates who have the passion to work and help others. I also chose to help the Foundation. Thank you to everyone! The more contributors the better and easier it is to help each other on this journey as caretakers and patients.

I was diagnosed with cholangiocarcinoma in November of 2015. At the time I was 28 years old, and no one in my immediate support circle had dealt with cancer before, much less a rare and difficult to treat disease like chonagiocarcinoma. The evening of my diagnosis I turned to Google. The first link I clicked provided a dire (and outdated) summary of what I was up against, and it took no small amount of will to subject my emotions to a second click of the mouse. I am so grateful that I did.

The Cholangiocarcinoma Foundation's website was the second that I visited laying in my hospital bed that evening, and it turned into my homepage in the months that followed. I signed up for the discussion boards, and a fellow patient called me on a Saturday to connect and help me navigate the resources. When I needed help understanding the jargon, I used the Foundation's resources and Newly Diagnosed section. When I was hungry for hopeful updates around scientific progress, I watched videos from the Foundation's annual conference. When I was scared of how treatment might change my body and my life, I posted my questions on the discussion boards and was flooded with answers and love.

I am now over two and a half years into my battle with cholangiocarcinoma, and the Cholangiocarcinoma Foundation continues to be a fixture in my life, both in ways known and unknown. I still rely on their resources for support and scientific enlightenment, but I also benefit from the research they sponsor and the connections they are building between physicians around the world. The Foundation serves as a pathway for medical collaboration, something that I as a patient may not see, but benefit from as these brilliant minds work together towards a cure.

The Cholangiocarcinoma Foundation is THE go-to organization for this horrible disease. Every day, they're working with researchers, clinicians and institutions to work towards the cure.

I was diagnosed with Cholangiocarcinoma in April of 2014. This is a very rare cancer and the information available was scarce and very scary. Thankfully I found the Cholangiocarcinoma Foundation. Because of the Foundations efforts I was able to connect with the Cancer Hospitals, and Doctors best suited for treating me. The Foundation also connected me with other patients fighting this disease. I attended the Cholangiocarcinoma Foudation Conference for the first time in 2017 and was amazed at what they have accomplished in the 11 years of it's existence. The presenters were some of the top researchers and doctors from the best cancer centers/hospitals in the world. My cancer is in remission but CC has a very high rate of recurrence and the Foundation continues keep us patients current on the latest treatments and services available which gives me the confidence I am prepared to address a recurrence. The Foundation with all of its very dedicated volunteers work all year round raising awareness, fundraising and making grants to the appropriate organizations to further research and development of treatments for this disease.
The Cholangiocarcinoma Foundation is saving lives from being cut short by this disease.

Greg Friedmann
Grateful Survivor

I became aware of CCF four years ago after being diagnosed with intrahepatic carcinoma and was looking for more information on this type of cancer, recommended treatment and prognosis. Their booklet "100 Questions and Answers About Biliary Cancer" was very helpful. CCF has expanded their services to include sponsoring yearly conferences for researchers, health professionals, patients and caregivers. The conference gathers researchers from around the world to present the latest finding on diagnosis and treatment. These presentations are available on the CCF website for everyone to read. Additionally, CCF fund raises and supports further research. CCF also produces webnars on topics useful for patients and caregivers and hosts chats where people can talk with others to get support. This is the only organization that provides comprehensive services for those affected by cholangiocarcinoma.

My mother was diagnosed with cholangiocarcinoma and this was the best resource that I found and used when doing research about this rare disease. This is a very small nonprofit with dedicated and knowledgable staff and I decided to help out by volunteering.

This is an incredible caring group of people, many of whom are volunteers, who try to support patients and caregivers dealing with this rare cancer.

Their website is very informative regarding the disease, treatment options, treatment centers and much more. And they have a discussion board where people can share their feelings, ask others about their experience(s) ask moderators for recommendations and provide a forum for this group to support each other.

The members of the organization are very helpful and work extremely hard to foster relationships across the medical community to find move avenues for treatment and for preventing this disease.

When my Dad was diagnosed with cholangiocarcinoma, one of the first things I did was turn to google. I knew nothing about the disease, but I knew it was bad. I was determined to immerse myself in all the information I could as quickly as possible. I found the Cholangiocarcinoma Foundation and immediately began devouring all of the amazing information they had on the site. Their site content, social media presence and simply their existence made us feel so much less alone in the face of a terrible diagnosis.

My Dad lost his battle with the disease 4 months after diagnosis, but my family remains active in fundraising and supporting the organization in any way we can. We know what's it like to have a loved one suffer, and this Foundation goes a long way in educating and empowering patients, their caregivers and their providers.. We are so grateful they exist!

Cholangiocarcinoma Foundation is a wonderful organization with a mandate to bring support to patients. We bring researchers and patients together to share knowledge, resources, and emotional support. Since cholangiocarcinoma exists as a rare disease, even community oncologist are not always up-to-date about this support group. Please join us to spread the word for this worthwhile cause.

For the past 3 years I have partnered with the Cholangiocarcinoma Foundation in an effort to raise funds. Next month with be my 3rd annual Carnival for the Cure event to raise awareness of this rare cancer and honor a family member who died from Cholangiocarcinoma. The first two years we split the funds between the Cholangiocarcinoma Foundation and a local cancer hospital where the family member was located. I can say that the the Cholangiocarcinoma Foundation was extremely supportive of our event and was willing to help in any way they could. We did not have the same luck with the other charity, and it seemed like we were to small for their support. The Cholangiocarcinoma Foundation sent information and bracelets to give away to all our guests, and did not hesitate at any request. It has been a pleasure working with them, and to play a small part in helping them continue their efforts to find a cure and provide support to those effected.

Cholangio carcinoma is a rare, usually deadly, overlooked cancer.
The CHOLANGIOCARCINOMA FOUNDATION first and foremost makes people aware of this disease, brings patients and families together with an incredible outreach program, and annual conference, an online network, and print materials. The conference, held in Salt Lake City provides free attendance to patients which is extraordinary. Unlike many organizations, the staff is not pulling exorbitant salaries and contributions truly go toward research and patient care. The CHOLANGIO CARCINOMA FOUNDATION is truly an exemplary non-profit organization.

When I was diagnosed in 2008 with cholangiocarcinoma (CCA), It was an unknown illness. There was very little information available and it was very dated. My wife Pat and I felt alone, with little hope since we had never heard of anyone else having such a rare condition.
My oncologist, for whom I have the utmost respect, told me about this organization and it has been a blessing ever since. I connected to the web site and was surprised at the abundance of information available along with support, resources and contacts.
We have attended the last two conferences in Salt Lake City and I had the honor to present my story at the 2017 conference. Having met numerous others who are dealing with this cancer and fighting the battle, we no longer feel alone. We have gained friends with whom we maintain contact and I have even been contacted be several fellow patients to help them understand how we have dealt with biliary cancer.
This is an amazing organization, run by fantastic and caring people. I have recommended CCF to many patients and always received positive feedback from them. I will be eternally grateful for the help I've received from the Cholangiocarcinoma Foundation.