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Cholangiocarcinoma Foundation

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Nonprofit Overview

Causes: Cancer, Digestive Diseases & Disorders, Digestive Diseases & Disorders Research, Health, Medical Research

Mission: Our mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer).

Results: - Over $1 million has been donated for research to date. - Our 4th Annual Conference was held Feb. 1-3, 2017 and attracted 283 attendees representing 36 states and 16 countries. Nearly 90 physicians and researchers from 76 medical institutions and 128 patients and caregivers were present among others. A total of 44 sessions featuring 41 speakers were offered in addition to 38 posters presentations and ancillary focus group meetings. - The International Cholangiocarcinoma Research Network has been established to accelerate the clinical translation of scientific discoveries and impact the lives of patients with cholangiocarcinoma. - The CholangioConnect mentoring program has been launched to create personalized connections that enable one-on-one support among cholangiocarcinoma fighters, survivors and caregivers. - The website Discussion Board has received approximately 100,000 posts on 13,500 subjects to date.

Target demographics: Individuals with cholangiocarcinoma and their families.

Direct beneficiaries per year: Approximately 10,000 people are diagnosed with bile duct cancer in the US each year.

Geographic areas served: Internationally

Programs: CCF provides patient and caregiver education, support and advocacy services, funds research, hosts a patient registry, and organizes the largest multi-disciplinary international conference in the world solely focused on cholangiocarcinoma. The Foundation’s receives 300,000+ global hits annually on its website and has posted approximately 100 webinars and educational sessions to YouTube and Vimeo.

Community Stories

60 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

I was introduced to the Cholangiocarcinoma Foundation by my mother, a patient with cholangiocarcinoma. The Foundation provides a format for patients, caregivers, and medical professions to interact both formally and informally. The community they created is an invaluable resource to many... I know it was for my family during my mom’s difficult cancer journey. While they do amazing work with advocacy, research, and searching for a cure, they also provide something that money can not buy, hope— to many people when they need it most. I feel lucky to be a volunteer for the Cholangiocarcinoma Foundation. They have given me a positive and meaningful outlet to channel the grief that accompanies losing a loved one to cancer.

Volunteer

Rating: 5

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.

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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!


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Client Served

Rating: 5

My husband’s diagnosis of bile duct cancer was frightening. We knew nothing about this type of cancer and felt so alone. It did not take us long to learn that little is known about this disease and that a great deal of research is needed for early detection, diagnosis and treatment. Fortunately, we also learned how valuable of a resource the Cholangiocarcinoma Foundation (CCF) is for those whose lives have been touch by this deadly cancer. Whether you are a patient, caregiver, advocate, or medical professional, the CCF offers support, education and collaborative opportunities for everyone! For me, the fact that the CCF keeps its overall focus on finding a cure is crucial as well as comforting.

General Member of the Public

Rating: 5

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.

Cait.Telaak

Client Served

Rating: 5

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.

lisacraine

Volunteer

Rating: 5

The Cholangiocarcinoma Foundation was the first place that offered me HOPE and support when I was diagnosed in 2010. I’ve never felt alone since finding them and now I get to be a part of giving back as a volunteer and patient advocate.

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Volunteer

Rating: 5

The Cholangiocarcinoma Foundation was the first place I found when I was diagnosed Stage IV ICC in 2010. The organization is staffed with caring and compassionate individuals who have a passion for making a difference in the lives of cancer patients. They are extremely informative in helping you navigate care, clinical trials and other new treatment options. I have met some of my best friends through this group and find wonderful support through their patient board. Other foundations could use the Cholangiocarcinoma Foundation as a model to replicate.
Lisa Craine

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Rick435

Donor

Rating: 5

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.

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Volunteer

Rating: 5

A caring group of caregivers, researchers and doctors all working toward a cure. They're a fantastic organization putting their money to good use.

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1 Greg F.1

Client Served

Rating: 5

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

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Client Served

Rating: 5

My name is Greg Friedmann and I was diagnosed with Extrahepatic Perihilar Cholangiocarcinoma in April of 2014. I did a lot of research and compared to other more common cancers there was little experience among the doctors and hospitals in and around my home (Cincinnati Ohio).
I then found the Cholangiocarcinoma Foundation and instantly had access to the information and expertise Stacie Lindsey has amassed over the last ten years. In my opinion this Foundation has brought the awareness of this disease from obscurity into the light of day and along the way brought together some of the best and brightest from around the world to help find a cure. The Foundation has also raised millions of $ and put it to work with theses scientist, doctors and research hospitals.
I am currently NED because of the expertise that exists today and I feel that because of the Cholangiocarcinoma Foundation and what it makes available to patients such as me, I am well equipped to deal with the eventuality of a recurrence heaven forbid.
Thank You Stacie and all involved that make the Foundation what it is.
Thankfully
Greg Friedmann

Client Served

Rating: 5

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.

Ben_51

Volunteer

Rating: 5

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.

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Volunteer

Rating: 5

When my mom was diagnosed with cholangioncarcinoma, the foundation was the only website that specialized with information specifically for her condition. They provided excellent and invaluable information for our family, especially the 100 questions booklet.

1

Client Served

Rating: 5

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.

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Client Served

Rating: 5

A special group of dedicated people who provide tremendous empathy and support. I learned about the Cholangiocarcinoma Foundation when my wife was diagnosed. This was the first organization I found when trying to understand about this terrible cancer. In addition to providing a great deal of information regarding the disease, resources, clinical trials, etc. I went to this site every day to their discussion boards. What an amazing group of moderators who made each person feel special while trying to help them through every challenge faced as a patient and caregiver. I am grateful to the people in this organization and to the many volunteers willing to help others.

Volunteer

Rating: 5

My dad is a survivor of Cholangiocarcinoma. We have hiked to raise money for this foundation over the years. It is so important for people to have somewhere to turn for information regarding this frightening disease. We need to raise awhareness about Cholangiocarcinoma and raise money to help research and find a cure. Our Hike for Hope in Ivoryton Connecticut does just that. Thank you Cholangiocarcinoma Foundation.

Donor

Rating: 5

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!

Branden L.

Volunteer

Rating: 5

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.

Donor

Rating: 5

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.

Marsha Davidson G.

Volunteer

Rating: 5

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.

Gary R.1

Client Served

Rating: 5

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.

Client Served

Rating: 5

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!

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General Member of the Public

Rating: 5

A cancer diagnosis is heartbreaking but especially so with a rare and aggressive cancer such as Cholangiocarcinoma. It is frightening to navigate the medical system when so few practitioners have direct experience with this cancer at the same time treatment decisions must be taken quickly. The Cholangiocarcinoma Foundation plays a critical and at times life-saving role. The medical experts I have dealt with know of the Cholangiocarcinoma Foundation and have referred me to its wonderful on-line resources. I have contacted the Foundation outreach staff for advice and responses have been timely and sympathetic. The Foundation supports urgently needed research and through its moderated discussion boards allows patients and caregivers to educate each other about their experiences with diagnosis and treatments and to see there are many positive stories and reasons for hope. I cannot think of higher praise for this organization.