Over 1.8 million nonprofits and charities for donors, volunteers and funders

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

Volunteering Oportunities

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: During 2015-16 we launched our first Research Fellowship Program. This year we were able to provide five research fellowship awards ranging from $40,000-$60,000, twice what we were able to fund in research the prior year. This year’s awards included three named fellowships in memory of courageous individuals whose lives were cut too short by this devastating disease, and one grant in collaboration with the Conquer Cancer Foundation of the American Society of Clinical Oncology. In future years we hope to partner with additional professional associations and charitable foundations to expand our research funding. Over the past four years, we also have provided over $115,000 to the International Hepatobiliary Neoplasia Biorepository (IHNB) to develop a resource bank of clinical information and biospecimens from persons having or at risk for hepatobiliary cancers, including family members of patients. The IHNB’s goal is to create a unique resource to enable future biomarker discovery and validation studies; to partner with researchers from other institutions by sharing biospecimens and data for collaborative research efforts which are critical to advancing the field of cholangiocarcinoma; and to actively enroll fifteen centers into the study by the end of 2015. Over the past three years we have provided $190,000 to the Genome Wide Association Studies (GWAS) project. The GWAS is an approach that involves rapidly scanning markers across the complete sets of DNA, or genomes, of many people to find genetic variations associated with a particular disease. Once new genetic associations are identified, researchers can use the information to develop better strategies to detect, treat and prevent the disease. Such studies are particularly useful in finding genetic variations that contribute to common, complex diseases, such as asthma, cancer, diabetes, heart disease and mental illnesses, as well as cholangiocarcinoma. In 2014, we established the International Cholangiocarcinoma Patient Registry (ICPR). The mission of the ICPR is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. To date, over 450 patients or family members have completed registry profiles. The ICPR will also assist in the screening of appropriate participants for research studies and clinical trials. Ultimately, the goal of the Registry is to assist, accelerate and support research of bile duct cancer into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure. It is the only registry of patient health information solely related to cholangiocarcinoma in the world. It provides an unprecedented resource of data about family history, risk factors and more to the medical and scientific communities, and patients as well.

Target demographics: Individuals with bile duct cancer and their families.

Direct beneficiaries per year: Approximately 5,000 people are diagnosed with bile duct cancer in the US each year.

Geographic areas served: Based in Salt Lake City, UT, we are the only US nonprofit organization dedicated to funding research and supportive patient and family services for individuals diagnosed with bile duct cancer.

Programs: During 2015, we will fund over $300,000 in research. We also will be hosting our 3rd Annual Conference in 2016. Additionally, we provide a variety of patient services. One such resource is a 136-page book titled “100 Questions and Answers About Biliary Cancer” which is offered free upon request in both digital and printed formats. Our informational tri-fold brochure “Cholangiocarcinoma” is published in four languages, English, Chinese, Japanese and Spanish. We also have a double-sided page fact-sheet in English that can be used as a poster. Our twice-yearly newsletter is distributed to over 8,000 email subscribers. We have developed a Biliary Emergency Information Card to address an emergent need to facilitate physician-to-physician communication, assuring prompt and definitive medical treatment in a biliary emergency. Instructions on the card include specific emergency treatment guidelines and a Quick Response (QR) code that medical personnel can scan for additional information and resources. Patients and caregivers can easily download and print the card from the CCF website (http://cholangiocarcinoma.org/biliary-emergency-information-card/) and carry it in their wallets to give to health care providers. This card educates patients on symptoms of a biliary emergency and empowers them to be an active participant in their own care. Patients and family members are encouraged to call our phone number to speak with our President, Executive Director, or Chief Advocacy Officer who are all available to personally answer questions regarding current treatment options, clinical trials, leading medical institutions/teaching hospitals treating cholangiocarcinoma, and more, as well as to lend and ear and provide emotional support during this difficult time. During 2014, our website received nearly 230,000 hits (4,500 per week) from 112,000 unique users. Users stayed on the page for an average of 4 minutes and 43 seconds, looking at an average of over five pages per visit. Our website provides a wide variety of services to patients and family members including a patient-authored blog, a robust internet discussion board (with over 91,000 posts, 3,400 registered users, and over 13,000 topics of interest), e-publications, and other resources to help patients, families and medical professionals learn about diagnosis, current treatments and the latest research as well as links to organizations offering financial assistance to individuals. The website also connects users to our social media pages including Facebook (8,300 likes), Twitter (700 followers), as well as Instagram, Linkedin, Vimeo and YouTube. We have 25 webinars posted on our video sharing sites.

Community Stories

29 Stories from Volunteers, Donors & Supporters

3

Client Served

Rating: 5

This organization has been a great source of support throughout my journey. I am especially comforted by how accessible the people of the foundation are to discuss issues (such as fundraising ideas and resources available). All the people involved seem to be totally invested due to personal experience with the terrible and rare cancer. My son in law and I have bonded through running and fundraising to honor my daughter whom we lost on 11-17-2013.

2

Client Served

Rating: 5

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!

3

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.

3 Samantha90

Donor

Rating: 5

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.

3 Deborah167

Volunteer

Rating: 5

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

3

Volunteer

Rating: 5

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.

4

Volunteer

Rating: 5

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.

4 Ben_51

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.

3

Volunteer

Rating: 5

The Cholangiocarcinoma Foundation provided information and resources for my family during one of the worst times in our lives. My father, my best buddy, was diagnosed with stage 4 Cholangiocarcinoma in January of 2016 and passed away within months, in May of 2016. With this devastating news came a very poor prognosis but we knew we would fight. The research began and we came across The Cholangiocarcinoma Foundation, which led us to find the top specialty doctors for opinions, information on treatments, personal stories, and support. Cholangiocarcinoma is a devastating, complicated, and tragic disease. This Foundation is a support to families in a time of need when we feel so alone and so helpless. The annual conference hosted by the Foundation brings patients, caregivers, and doctors together to find a cure. The specialist we went to at Mayo Clinic, Dr. Gores recommended we go to the conference. The knowledge we gained about the disease prepared us for the devastating complications associated with this disease that were to come. The relationships formed with others affected by this disease will last a lifetime and we know these wonderful people because this Foundation brought us together to support one another. This disease needs awareness, research, and a cure. The Cholangiocarcinoma Foundation advocates for a cure and I will continue to support it in honor of my Dad. I miss you and love you everyday Daddy.

2

Volunteer

Rating: 4

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.