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If you haven’t taken the surveys, please take a few moments to complete them. These surveys are very important in our planning for the conference.

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.

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.

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.

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.

We encourage you to login before the conference starts to familiarize yourself with the platform. This week we are sharing 5 tutorial videos to help you learn your way around the platform.

CCF’s 8th Annual Conference is around the corner! We encourage you to use hashtags to help friends, family and colleagues know what is happening at this conference.

CCF’s 8th Annual Conference is 19 days away! Join more than 1,000 patients, caregivers, scientists, researchers, and healthcare providers from around the globe.

Awareness Month 2021 has been the most impactful yet! Thank you to all those that participated in shining a light on cholangiocarcinoma this year.

“This is an important milestone for this community and specifically for patients with an IDH1 mutation.”

Our conference is jam-packed with fun games, trivia and more. We’ve created several ways for you to feel involved and connect with other CCF friends.

CCF has partnered with the newly formed Japan Cholangiocarcinoma Association to serve patients, raise awareness, fund and create a network for research and healthcare providers in Japan and throughout Asia.

We teamed up with Mill Pond Communications, with support from QED Theraputics and Bayer to create several patient-friendly videos explaining important topics about CCA.

Josh Bloomfield was a top blues drummer and vocalist who contributed so much to his 41 years of life. Although short in stature, his large personality and musical talents made a splash in the Capital Region.

World Cholangiocarcinoma (CCA) Day is an international effort to raise much-needed awareness of CCA. This disease is increasing in incidence globally and we believe collaboration is crucial to move forward towards a cure.

This month, we invite everyone to participate in Cholangiocarcinoma Awareness Month. Let’s work together to raise much-needed awareness by shining a light on CCA throughout the world.

CCF plans to have some fun during the conference! We are excited to announce our second annual Music Video Contest and this year’s winning song.

The American Society of Clinical Oncology Gastrointestinal Cancers Symposium (GI ASCO) recognizes the important role clinical trials play in cancer advancements, especially GI cancers.

In 2021, the organization will celebrate its rich history and the many individuals and organizations who have contributed to the organization’s growth and the impact it has made in the cancer community.

GI ASCO is a global symposium that delivers the latest and most innovative science, research, and multidisciplinary educational content in the GI cancers field.

Collaboration is a core value at CCF and is fundamental to the Foundation’s growth and ability to provide high-quality programs and services to the CCA community.

You are the future of research, and we want you to know that your validated data matters. When you request your health records and share your data with Ciitizen, you are helping us find a cure for cholangiocarcinoma (CCA).

We hope you had a Happy New Year! Exciting things are happening at Cholangiocarcinoma Foundation (CCF) this year, including celebrating our 15th Anniversary and more.

Please help us participate in CCF’s Light It Green For CC project! We are excited to grow this campaign in 2021.

I am a 40 year old mother of two, Grace (9) and Connor (7). I am incredibly lucky to be married to my best friend and love of my life Jason, who is the pillar of our family.

“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,…

Matt Reidy was diagnosed in 2013 with stage II perihilar CC. Matt is from Richmond, VA, is married with 4 children ages 12-25. Matt is a retired IT Executive and enjoys wood. working, sailing, water sports.

As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. Your Year-End Giving can make a long-term impact.

The Cholangiocarcinoma Foundation (CCF) received a gift of $500,000, the largest in its history, from The Scott Family, in memory of wife and mother, Andrea (Breuhan) Scott, who lost her courageous 18-month battle with the disease in 2014.

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.

There is a lot of planning that goes on behind the scenes and we are working hard to make it the best conference yet. This week we are sharing 5 ways you can get involved with the 2021 Annual Conference now.

CCF is excited to announce the 2021 Annual Conference t-shirt logo contest. CCF is now accepting logo proposals for t-shirts, which will be introduced for the Annual Conference.

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…

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.

Researchers at Emory University are studying quality of life among patients with cholangiocarcinoma (CCA). Please consider taking this brief survey to help them better understand patient experiences for those living with CCA.

This holiday season, we are asking everyone to take part in our annual year-end holiday campaign called #CandlesForTheCure by lighting a virtual candle in honor or memory of friends or family who have been affected by cholangiocarcinoma.

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…

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.…

Home / Blog / We’re planning the 2021 Annual Conference and we need your feedback! We are hard at work planning our virtual Annual Conference, to be held March 31—April 2, 2021. One of the key components of the Conference is Patient Day, where we seek to provide our community with information, support and a…

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.

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…

Holiday sales events are happening from November 27th – December 1st. Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? A stocking stuffer? Look no further than the CCF Awareness Store.

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…

The reason the holidays are “the most wonderful time of the year” is that we’re reminded to be thankful, reflect on our blessings, and do acts of kindness that bless us in return. As the holiday season approaches celebrate the spirit of the season by giving back.

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…

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…

In our most recent November Volunteer Meeting, we discussed the newest projects that we are working on and how YOU can get involved. No matter your skills or availability, we have a place for you.

Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? Look no further than the CCF Awareness Store. This week we’d like to highlight 5 of our newest items!

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.

As we approach the end of the year and giving season, here are 5 great ways to support CCF in our mission to find a cure and improve the quality of life for patients.

The Holiday Season is approaching us and will be here before we know it. This week we’d like to share 5 ways you can get involved with the CCF community and help make a difference.

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…

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…

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.

We are pleased to announce that 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.

We want to make sure you’re in the know. This week we’d like to share 5 exciting events that are happening soon. Be sure to add these events to your calendar and share them with your friends and family.

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…

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.

As biliary tract cancer (BTC) patients typically survive less than one year on standard-of-care chemotherapy, adapting prognostic biomarkers to guide their management remains challenging.

Every contribution, regardless of size, makes a difference and is an investment in education, research, and advocacy to find a cure for cholangiocarcinoma.

Finding a cure is at the heart of all we do for our patients and clinical trials are essential to our mission. This week we’d like to share 5 resources that will help find the right clinical trial for you!

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.

We cannot do this without your help! This week we’d like to share 5 ways YOU can get involved in Rare Cancer Day to help us spread awareness.

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.

This week we’d like to share 5 resources that explain the benefits of nutrition while being treated for cancer.

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.

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.

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.

In preparation for Grateful Patient Day, we’d like to share 5 ways you can share your gratitude for those that have helped in your cholangiocarcinoma journey – whether it be doctors, nurses, researchers, therapists, or technicians.

Dr. Supriya Kumar “Shoop” Saha passed away on May 6, 2020 after battling the complications from a bone marrow transplant for the treatment of myelofibrosis. He was only 40 years old. He was one of the first recipients of a Cholangiocarcinoma Fellowship Award.

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.

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.

We have some amazing events planned in the future that you’re going to want to be a part of. Whatever your personality or interest there is something for you.

This week we are sharing 5 upcoming events that you’ll want to add to your calendar.

Cholangiocarcinoma Foundation (CCF) is a proud member of The Working Consistent Group. Together with 41 other advocacy organizations, we committed to clarifying and promoting consistent use of common terms for biomarker and germline genetic testing.

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.

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.

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

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

In preparation, we’d like to share 5 things to do before the conference.

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.…

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…

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

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

In preparation, we’d like to share 5 things to do before the conference.

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…

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

CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!

This week we present 5 ways you can win prizes at this year’s Annual Conference.

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…

Diagnosed with stage IV cholangiocarcinoma, I enrolled in a study investigating tumor-infiltrating lymphocyte therapy. That was 10 years ago.

“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…

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…

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…

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!