We are writing to request your participation in a research study. The study is being conducted through the Winship Cancer Institute at Emory University in collaboration with the Cholangiocarcinoma Foundation and Ciitizen.

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“Let food by thy medicine and let medicine be thy food”.  Hippocrates is thought to be the source of this quote, but Dr. William Li, world-renowned physician, scientist, and author, reiterated this concept during his keynote speech at the Cholangiocarcinoma Foundation’s Annual Conference on August 4, 2020.  Dr. Li authored a recently published book entitled,…

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My name is Tom Leitzke. I was born and raised in Sandusky, Ohio, and was living as an expatriate in Japan, managing global operations for a publicly-traded robotics company when I was diagnosed with perihilar cholangiocarcinoma (stage 3B) in 2007. I was 58.

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The Cholangiocarcinoma Foundation (CCF) celebrates the November 30, 2020 FDA breakthrough therapy designation for Zanidatamab in patients with previously-treated HER2 gene-amplified biliary tract cancer. A HER-2 or Human Epidermal Growth Factor Receptor 2 mutation occurs when cancer causes the HER-2 cell to produce too much protein, resulting in cells dividing and growing too fast. HER-2…

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My name is Alie Plouff, and I am a volunteer and former caregiver with the Cholangiocarcinoma Foundation. I first discovered the Cholangiocarcinoma Foundation when my parents returned home from the Annual Conference in Salt Lake City in 2016.

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Three impactful ways you can make a year-end gift As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. One good thing to come out of the COVID Pandemic is the CARES Act (Coronavirus Aid, Relief, and Economic Security Act) provisions for charitable giving. The…

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On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the December 1, 2020 FDA acceptance of Infigratinib. QED Therapeutics, is a subsidiary of BridgeBio, which is focused on precision medicine for FGFR-driven cancers. Infigratinib is an oral FGFR1-3 selective inhibitor, for individuals with cholangiocarcinoma, or cancer of the bile ducts.…

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My name is Libby Wolfe. I live in Pewaukee, Wisconsin. I grew up in Connecticut, went to college in Virginia, and moved to Chicago in the 1970s. In Chicago, I worked as a property manager for a Real Estate firm.

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Each week we present the latest information and updates relevant to the CCF community. Support Groups will be held the 1st (Patient) and 3rd (Caregiver) week of every month and Educational Webinars will be held on the 2nd and 4th week of each month. Please join us the first Thursday of the month for a…

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Stacie C. Lindsey, Chief Executive Officer & Founder of the Cholangiocarcinoma Foundation is one of five leading individuals who will receive a Luminary Award in GI Cancers from OncLive and The Ruesch Center at their virtual 11th Annual Ruesch Symposium. The award winners are being honored for their lifetime achievements focused on finding cures for…

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Help us meet our goal of 100 new sign-ups by 2021! Join the CCF registry through Ciitizen to advance research for cholangiocarcinoma, and Ciitizen will donate $25 to CCF. During the “Giving Thanks by Giving Back” Campaign, CCF and Ciitizen are partnering up with the goal of helping at least 100 patients collect, summarize and share…

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Giving is not just about making a donation, it’s about making a difference! Last year on Giving Tuesday, people came together on Facebook to raise more than $120 million to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to…

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NuCana will introduce the science behind NUC-1031, the medicine being compared in combination with cisplatin in the NuTide:121 study against the current standard of care in Biliary Tract Cancer, gemcitabine and cisplatin.

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Join the Cholangiocarcinoma Foundation’s first Virtual Turkey Trot Run/Bike/Walk! TeamCCF and the Cholangiocarcinoma Foundation are hosting their 1st Annual Virtual Turkey Trot. It is open to different physical activities such as running, biking, or walking. The goal is to encourage participation in healthy and fun physical activity while raising funds for cancer research. Participants choose…

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Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangio took us by storm. Being the first born, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease…

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The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements. Patients share news and personal anecdotes, and the blog also serves as a resource for you to familiarize themselves with the Foundation.

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Drs. Bridgewater and Meric-Bernstram to Chair The 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually March 31st- April 2nd, 2021. John Bridgewater, MD, PhD of the UCL Cancer Institute, London and Funda Meric- Bernstram, MD of MD Anderson Cancer Center will Co-Chair the event. Dr. Bridgewater specializes in gastrointestinal oncology, with a particular interest…

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Mike Shane Memorial Fund (MSMF) just recently turned one! In the past year MSMF has helped 7 cholangiocarcinoma patients get a second opinion. All donations they receive go to second opinions.

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When I thought of the word rare I envisioned something precious, beautiful and exceptional, like an amazing piece of art in a museum; something that brought joy and smiles to people. I didn’t think of diseases until I was diagnosed with Stage IV Cholangiocarcinoma in 2010.

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Don’t forget to mark your calendar for Rare Cancer Day, on September 30th. The Cholangiocarcinoma Foundation (CCF) partners with NORD every year to join together and raise awareness for rare cancers, specifically cholangiocarcinoma.

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On September 7th, 2020 the Cholangiocarcinoma Foundation (CCF) participated in Grateful Patient Day. Each year, Grateful Patient Day spotlights stories of gratitude for doctors, nurses, researchers, medicines and procedures that help patients.

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Cancer doesn’t just change the life of the patient; it changes the life of a community. And that is what we are in Palmyra, Pennsylvania, a community. Coach Geoff Good, a father, husband and a friend, was diagnosed with Cholangiocarcinoma.

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Being a caregiver is the role of a lifetime. I think most of us take on this role without any hesitation. This was true in my case. Alongside my dad and sister, I took on the role of being one of my mom’s caregiver’s after her cholangiocarcinoma diagnosis.

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We should, I thought, be compatriots: brothers-in-arms who’d lost their loved-one to an unfair, unlikely illness. What were chances that I’d come from South Africa to Italy only to stumble across someone who’d lost her husband to the same rare cancer my son succumbed to? I was even more astonished to discover we’d shared the same oncology team.

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During our 2020 Annual conference, Incyte shared the results from a 700 patient survey. The survey found that the quality of life for patients with cholangiocarcinoma is heavily impacted by a host of symptoms and side effects, including depression that may be severe.

This week we’d like to offer 5 reliable resources to help navigate through depression.

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We are SO thankful for all of our volunteers who work tirelessly to support CCF in any way they can. “One of the greatest gifts you can give is your time.” This week we would like to highlight 5 events that our amazing volunteers put together.

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Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

Our 2020 Annual Conference was unforgettable! We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference. Over 1,600 individuals from 49 states and 44 countries registered, which is 3x more than our previous conference!

During the conference, we presented exciting new research collaborations, programs, and more crucial information that will continue to move us toward better treatment options for patients.

If you missed it, we’d like to share 5 highlights from the conference.

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We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference on July 22-24th. More than 1,600 individuals from 49 states and 44 countries representing healthcare, industry, patient advocacy organizations, patients, caregivers, academia, and supporters logged in for 3 days of connection through inspirational stories…

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Subscribe to our YouTube Channel Do you have questions about your health data privacy and your rights to access your own medical records? Join us for an educational webinar with health privacy and security expert Deven McGraw, who is Ciitizen’s Chief Regulatory Officer. Deven previously directed U.S. health privacy and security as Deputy Director, Health…

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Improved Communication Is Vital Between Patients and Providers About Testing Needs WASHINGTON, DC (July 7, 2020) — A LUNGevity Foundation-led consortium of 41 leading patient advocacy organizations, professional societies and industry partners has published a white paper detailing recommendations for the use of testing terminology in precision medicine for patient education throughout the cancer community.…

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Please join us this Thursday, July 9 for two events with our partners at Ciitizen! As part of the CCF Webinar Series, we will start with an educational webinar with Ciitizen’s Chief Regulatory Officer, Deven McGraw, focused on patient health data rights and privacy, and we will follow the webinar with a virtual onboarding event for anyone who…

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July is here, and the 2020 Cholangiocarcinoma Foundation’s Virtual Conference is just weeks away. CCF plans on having some fun during the conference! We’re excited to announce our first Lip Sync Battle. The winning song is “Fight Song” by Rachel Platten. Now it’s time for the fun to begin! Start planning your lip sync performances…

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We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Each week we present the latest information and updates relevant to the CCF community. Support Groups will…

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The COVID 19 pandemic is the most wide-reaching and devastating public health event of our lifetimes. It has reached nearly every corner of the globe. Even those who have not contracted the disease have been affected by it. The Cholangiocarcinoma Foundation would like to know how the COVID-19 pandemic has affected your, or your loved…

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Subscribe to our YouTube Channel The Cholangiocarcinoma Foundation is here for you! We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Our Clinical Trials…

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Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

CCF is holding it’s first athletic fundraiser: Moving for the Cure! Enjoy any activity, anywhere, and raise money for the Cholangiocarcinoma Foundation. All ages and athletic abilities can participate.

This week we present 5 ways you can get involved with Moving for the Cure.

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Subscribe to our YouTube Channel Register Here What is #MapItForward & the Real World Genomics Study Recent medical advances support the need for all cholangiocarcinoma patients to receive biomarker testing as part of their treatment, however the rate at which patients are actually receiving this testing in the real world is unknown. Real-world evidence is…

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Dear Friends, With the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and many others over the years and the confluence of recent events, important conversations are happening throughout the nation, including at CCF. We know there is work to do, within every organization and throughout the nation, for us to come together in…

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You spoke and we listened! In light of COVID-19 pandemic, the Cholangiocarcinoma Foundation created a weekly webinar series to help our community navigate through these difficult times. The response has been overwhelming and we will continue the weekly gatherings as long as there is interest! Based on an abundance of feedback, the weekly sessions will…

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You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to continue our series of webinars. Each week we will bring you the latest information and updates relevant to the CCF community. Our hope is to continue to connect, inspire, and educate. Bi-weekly educational webinars will feature the newest developments and presentations from experts…

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“Volunteers do not necessarily have the time, they have the heart.”  Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Week. Subscribe to our YouTube Channel Happy Volunteer Appreciation Week. You can join us in thanking our volunteers…

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FDA Approves Incyte’s Pemazyre™ (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma April 18, 2020 WILMINGTON, Del.–(BUSINESS WIRE)–Apr. 17, 2020– Incyte (Nasdaq:INCY) today announced that the U.S. Food and Drug Administration (FDA) has approved Pemazyre™ (pemigatinib), a kinase inhibitor indicated for the treatment of adults with previously treated, unresectable locally advanced…

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Around 9 o’clock on a Saturday night in January 2017, I heard weird noises in the bathroom. I opened the door to find my son curled over the toilet. “It’s only cranberry juice. It’s only cranberry juice,” he muttered into the bowl. I took a glance- that wasn’t cranberry juice. I can hardly believe it…

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Our friends at D2 Creative and Mill Pond Communications answered the #UNOpenBrief to help #STOPTHESPREAD of #COVID19. Their answer: an ILLUMINATION to help reduce face touching in the form of a playful 30-second PSA.

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CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies), especially in areas of significant community-based transmission.

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Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Month!

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Home / News None of us wanted it, Cholangiocarcinoma has thrust us, kicking and screaming into the role of potential superheroes. Let me explain… These are tough times as the world locks down. I’m sure many of you have already seen posts or heard from friends how they are struggling with the anxiety of not…

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Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.

This week, DO THE FIVE to help stop the disease.

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The information about the COVID-19 pandemic changes rapidly, and it’s hard to stay up to date with the latest information. On this Mayo Clinic Q&A podcast, Dr. Gregory Poland, answers COVID-19 questions.

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In this uncertain time, we want you to know, wherever you are that we are with you. Distance and physical separation cannot break the bonds we have made in this community.

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Home / Blog / What COVID-19 does to the human body Munich design house Kurzgesagt explains in an easy-to-understand video what happens to the human body once it has been infected with COVID-19. They look at how infection occurs, what cells are involved in both enabling and killing off the virus and how the autonomic immune…

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