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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. Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. It also highlights the challenges patients face and helps unify individuals living with rare cancers for awareness and early diagnosis.

We are thrilled to announce the theme for this year's Rare Cancer Day: Biomarker Testing. Analysis by the Consistent Testing Terminology Working Group indicates that varied testing terms are an obstacle to patient communication with providers about testing for their specific cancer type. This varied terminology is one patient-identified reason for confusion about testing, which impedes effective communication with providers and understanding about what testing means for their care. CCF recently worked with 41 other advocacy groups and joined the Consistent Testing Terminology Working Group to establish, clarify and promote consistent use of common terms for biomarker and germline genetic testing.

This unified voice will help the medical community and patients achieve common understanding about the benefits of testing. Moving forward, “Biomarker Testing” will be the term used to discuss tests that identify characteristics, targetable findings, or other test results originating from malignant tissue or blood. Join us in helping promote consistent use of common terms for biomarker and germline genetic testing and working together to achieve better communication between patients and providers about testing needs.

Rare Cancer Day is also a chance for us to bring awareness to the importance of biomarker testing. For cancer patients, biomarker testing may provide access to effective, personalized treatment options and clinical trials. If you’ve been diagnosed with cholangiocarcinoma, it is important that you and your doctor get as much information as possible about your tumor. Knowing your tumor’s biomarkers will help you both to make important decisions about your treatment.

During Rare Cancer Day we will be sharing stories of what it is like to live with a rare cancer and testimonials of patient experiences with biomarker testing. Together with NORD, CCF is kicking off the Voices of Rare Cancer Series with Kathy’s story of living with intrahepatic cholangiocarcinoma and her experience with genomic testing.

We want to share your rare cancer story!! If you're interested in sharing your story about biomarker testing or living with cholangiocarcinoma please email Allison Deragon.

Things to include in your story:

  • Advice for people that have a rare cancer
  • Your experience with Biomarker Testing
  • Testimonial of Biomarker Testing
  • What message do you have for others living with rare cancers?
  • How can others be their own health advocates?
  • Why is Biomarker Testing Important?
  • Share why you’re participating in Rare Cancer Day

You can share your story in text or video format. If you choose to send in text, please include a picture of yourself too. If you choose to send in a video, please include good lighting, clear audio, and film in 
landscape/horizontal formatting. We will be sharing your stories on our social media all day long on Rare Cancer Day.

“Alone we are rare, together we are strong.”

-NORD