Cholangiocarcinoma Foundation

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.

The Cholangiocarcinoma Foundation is an inspiring organization, bringing support and hope to patients diagnosed with this rare and lethal cancer, and to their families and caregivers. Two areas merit special mention. Through its outreach to clinicians and scientists and through its research grant programs, the Foundation is bringing this uncommon, complex cancer to the attention of young and upcoming researchers, a smart investment that lays groundwork for new treatments and someday a cure. Also, the Foundation's education programs channel up-to-date, practical information to patients and caregivers, through webinars, social media, publications and a discussion board. A truly standout organization!

The a Cholangiocarcinoma Foundation means so much to so many people including patients, caregivers, family members, and medical personnel. This devastating disease needs awareness and research and the Cholangiocarcinoma Foundation provides support to those in need. This foundation is one of the only groups that brings together patients, caregivers, researchers, doctors, and pharmaceutical companies to unite for a cure. So many individuals and families would feel so lost and alone if it weren't for this foundation. I can speak to all of these statements because my Dad was a patient. The Cholangiocarcinoma Foundation gave my family hope, gave my father hope, in a time where we felt there was none. I am forever grateful for this organization and the need for it is beyond measurable.

There are not enough stars to rate the extraordinary Cholangiocarcinoma Foundation. Every day the Cholangiocarcinoma Foundation shows how a small group of dedicated people can improve the lives of all those whose lives touch this disease- patients, caregivers, researchers, medical personnel and institutions. The Cholangiocarcinoma Foundation does this by providing a digital interactive forum for sharing informed information, sponsoring focused research and connecting across specialty boundaries to bring the very best ideas for treatment to everyone. And they do it everyday.

When Mom was first diagnosed with cholangiocarcinoma (CC), it was a cancer we had never even heard of but quickly learned it was a "bad one". We learned that it was very rare, and is typically diagnosed too late for successful treatment. The CC Foundation offered information and support that we could not find elsewhere. I came to learn how it was founded by people and families who were also touched by this horrible disease. They saw there was a gap in knowledge, support, treatment options and research and started the foundation to address the gaps. So much is done by volunteers. Information on their website was instrumental in allowing us to have Mom treated and still be alive today. In the four years since I have interacted with the foundation, I have seen tremendous strides in the treatments and hope available to CC patients. Much of this can be attributed to the work of the CCF. In addition to the discussion board for patients and caregivers, they support research and getting the medical community involved in coming up for ways to treat CC. I am amazed how a small organization founded by people who have lost loved ones has accomplished so much and improved the future prognosis for many CC patients. However, there is still so much left to accomplish. It asks for role below- I donate a little but wish I could afford more, I have the title "moderator" on the discussion board so maybe a volunteer, but mostly just a very thankful daughter who found this organization and wonderful group of people. They are helping patients survive, but also supporting the too many who still succumb to this lousy disease.

Cholangiocarcinoma is considered a rare cancer. As such, not only is a patient confronted with the daunting fact that a minority of funds are being spent on researching it, the patient must also deal with the emotional aspect of quite possibly never meeting or communicating with another individual that has this disease, subsequently feeling alone, isolated and possibly defeated.
The Cholangiocarcinoma foundation erases both of these aspects for patients. They diligently pursue the academic research of assisting in finding a cure for this disease, and unlike other cancer foundations, they actively assist patients in learning about how to contact one another...which is a major mental relief for many. It is rare, very rare, to find an organization that is focused on two symbiotic aspects of a disease in such a professional, yet human manner.

I'm in awe of the talent, committment, and passion of CCF.

When my mom was suddenly diagnosed with cholangiocarcinoma, the CCF was an invaluable resource. They provided information and a network to help us navigate this disease about which we knew nothing. They were very supportive and have been doing great work over the years.

This foundation does an outstanding job funneling a high percentage of donations to patient programs, research grants, and tools to facilitate international collaboration in cholangiocarcinoma research. The foundation heavily leverages volunteers and virtual work spaces to keep overhead costs extremely low.

The Cholangiocarcinoma Foundation has made great strides in advocating for increased research and grants for bile duct cancers since the Foundation was formed. As a result, research is swiftly progressing and crossing borders for greater impact and support for patients.

This site has been my sole source of information about Cholangiocarcinoma. It is run by an extraordinary core group of Moderaters, they are resourceful, compassionate and positively encouraging to everyone. With such a rare cancer, the personal stories and ability to actually interact with others who are fighting this disease, is invaluable!

This foundation was basically my sole source of information when my mother was diagnosed with cholangiocarcinoma in June 2015. There's really nothing else out there. That's why I decided to raise money for them for the Bank of America Chicago Marathon this year. I know that my donations count with CCF. Without this nonprofit, I would have had virtually no information to go off of when I was researching this disease.

Very important nonprofit doing extraordinary work on an often overlooked cancer.

Like many I had never heard of Cholangiocarcinoma until my dad was diagnosed with it in 2008. So much to learn in such a quick time period I turned to the help and support of the people of the Cholangiocarcinoma Foundation and have been a volunteer with them ever since. All I can say if you or a loved one is touched by this horrible disease then please go there as you will find a wealth of information and get the help and support of some of the best and friendliest people out there.

I am extremely proud to be a small part of this organisation and I know that I will be a part of it for life. Please, do not go through this alone. Go over the to the CCF and you will be around people how know how you feel, what you are going through and will be there for you. It does not matter if you are a patient, family member, carer or a friend of someone with CC, do not go through this alone. Stronger together.

Thank you.

I had never heard of cholangiocarcinoma until the day my husband was diagnosed in May 2006. My desperate search for information led me to the Cholangiocarcinoma Foundation website. This was in the very early stages of the CCF. I immediately made some incredible connections and felt some comfort having conversations with others who understood what I was going through. My husband lost his battle in 2007, but I have become an active volunteer for this incredible foundation. I do as much as I can to raise awareness and I know that my time and effort is put to great use. For 5 years I have held an annual fundraiser, knowing that the monies raised are used to fund the much needed research that WILL one day find a CURE for this horrific cancer. This is an amazing foundation with so many incredible people. I am very proud to be a part of it.

My wife was diagnosis with stage IV cancer. After many tests the first doctor we saw could not find the primary source and wanted to treat as unknown primary. When we got a second option it was discovered she had Cholangiocarcinoma, or bile duct cancer. We had never heard of Cholangiocarcinoma. After she began treatments we began to learn more about Cholangiocarcinoma; I found the Cholangiocarcinoma and began to read other’s stories, much like ours. I ordered a copy of 100 Questions and Answers about Biliary Cancer and found other resources that could only be found on The Cholangiocarcinoma Foundation website. It is by far the best place to find information about Biliary Cancer; to find doctors and support.

Excellent source of information and support during my father's battle with cholangiocarcinoma

After our daughter was diagnosed with intrahepatic cholangiocarcinoma at age 45, we reached out to the foundation to find others and for information. They were very helpful. I support this organization as we must continue the search for a cure. We lost our wonderful girl to this devastating disease on Aug 20, 2016.

The Cholangiocarcioma Foundation is caring and personal. The staff and many volunteers put their heart and energy into making the lives of the patients and their families and caregivers better. The outpouring of support on the discussion board is overwhelming. This Foundation is growing and is THE source for those suffering from this rare form of cancer.

I discovered the foundation shortly after my diagnosis with Cholangiocarcinoma. The information they provide as well as the forum for patients, caregivers, and others to share information and experiences with this terrible, rare, cancer has been priceless to me and my family.

Truly a GAME CHANGER...I can attest that without the advocates, discussion board, and the referrals to physicians who truly CARE, I will be at loss in trying to help my father manage his diagnoses and treatments. I am also impressed they have now Spanish services now. If you can please, please, please donate money as much research is needed for this unheard condition so much that not all hospitals/surgeons know how to diagnose it. This is how I found out this foundation when the first medical team we approach were lost.

In 2012, I reached out to the foundation when are mom was given a short time to fight this cancer. The foundation inspires me to help others. I remember setting up our first fundraiser. We needed 100 CC bracelets. I called and reached Stacie Lindsey, the President of the foundation. She kindly overnighted tbe bracelets. Since then, I've been a volunteer. Love this foundation and the people behind the scenes who give their time & efforts to create change.

I found The Cholangiocarcinoma Foundation shortly after I lost my wonderful husband to biliary cancer in 2012. I continue to be amazed and proud of this wonderful organization. They strive everyday to do their best for those diagnosed with this disease along with the people who love and care for them. From support to education to research for the cure, The Cholangiocarcinoma Foundation deserves every kudo and accolade that comes its way, just ask anyone who has been touched by their compassion and generosity. Best non-profit? The Cholangiocarcinoma Foundation has my vote!

I want to recognize the CC Foundation for what they do 24 hours a day, 7 days a week, every week of the year. As a CC patient, I've received both emotional and treatment support from other foundation discussion board members through the diagnosis through treatment and post treatment of my cholangiocarcinoma. I think the best way to see just how great a job an organization like this is doing, is to see how many past patients and caregivers continue to come to the boards and help others in the same boat. They believe that strongly in this organization. I must say that though I am not one of the moderators, I frequently make comments on the boards either with personal experience or with emotional help for a patient or caregiver. It isn't easy being a patient with CC and posting sympathy to a caregiver who has lost a loved one to this disease, but I've received so much from the CC discussion boards, I feel that I should pay it forward and this organization is the perfect place to do that.

I have two loved family members who have passed from this disease. The Foundation has provide tremendous support and a vast array of resources for my family. It’s a Foundation that gives those impacted by cholangiocarcinoma ("CC") hope for a cure and aids to improve the quality of life for those affected by cholangiocarcinoma. The Cholangiocarcinoma Foundation has achieved progress year over year in its mission. I have witnessed many great strides including not only encouraging collaboration among the CC medical community, which is absolutely necessary for a rare disease, but also making that collaboration happen. This has aided in the education of others, both within and outside the medical community, to gain familiarity with the disease and further our understanding through research.

The Cholangiocarcinoma Foundation is an incredibly invaluable foundation that serves so many who are touched by this rare disease. As a patient, and an advocate, I can not say enough about the support, encouragement and hope that has come from this amazing group of people. They truly care, and are doing everything in their power to find a CURE.

We are very happy with this foundation, the staff is amazing, they care about you 24 hours a day! They try to make a difference with helping to find a worldwide cure for this rare and agressieve cancer that hits more and more people every day.

I found the Cholangiocarcinoma Foundation when trying to find some answers about this relatively unknown cancer when my father was diagnosed in 2011. This organization provides not only answers to questions pertaining to a cholangiocarcinoma diagnosis, but also an amazing support system for those diagnosed and their loved ones. Information from others' experiences helped in understanding treatment and gave me a way to share my father's experience. Although my father passed away in 2012, I am still a huge advocate for bringing awareness and hope to continue volunteering to bring more understanding of this cancer.

The Cholangiocarcinoma Foundation is an organization that one can support with absolute confidence. When a family member was stricken with this disease, the Foundation was instrumental in providing information and assistance. The Cholangiocarcinoma Foundation operates on a tight budget and no monies are every wasted. It is my understanding that they are involved in numerous important projects to promote additional research around the globe. I am pleased to give the Cholangiocarcinoma Foundation my highest recommendation.

My husband and I had never heard of cholangiocarcinoma until the day we received his diagnosis in 2011. An internet search for information led me to the Cholangiocarcinoma Foundation. This wonderful organization provided us information and support throughout his two and a half year journey. Although I can no longer help my husband, I now serve as a volunteer for the Cholangiocarcinoma Foundation. I know that my time is put to get use and that my donations are used to fund research that may one day eradicate this difficult and deadly disease.

The Cholangiocarcinoma Foundation was a great help in providing our daughter with information and direction to handle her fight with the disease. It also gave her a focus to use her talents in helping others to cope. We feel the foundation in using the donations they receive to fund research is the best way to help others and plan to support them in honor of our beloved daughter.