Rare Cancer Day

October 1 is Rare Cancer Day as proclaimed by the National Organization for Rare Disorders (NORD). The NORD website ​shares the goal is “To shine a light on the rare cancer community, a group of individuals who are often overlooked in the broader cancer community.”

The President and Founder of the Cholangiocarcinoma Foundation (CCF) Stacie Lindsey states that she is “thrilled about the focus on rare cancer.” NORD has a wonderful slogan “Alone we are rare. Together we are strong.”

Before being diagnosed with our rare cancer, when we thought of rare ​items - rare coins, stamps, artwork, gems, and much more came to mind. Now we feel like “rare birds” with an uncommon heterogeneous group of malignancies that can be difficult to treat and generally have a poor prognosis.

When first diagnosed, a good friend gifted me​ a colorful cloth bird with long tail feathers. This fine feathered friend travels to chemotherapy/immunotherapy and perches atop the IV pole. Her name is “Claudette Cancel” as she looks fancy and French. She has a sign with her name and phrase “Let’s cancel cancer,” along with positive words e.g. “effective,” “healing,” “gratitude” attached to the chemotherapy bags. The staff and patients enjoy the decorative touch and sentiments.

It is certainly easy to feel sorrow for oneself and wish we had a common cancer that everyone can pronounce and one with a better prognosis. Ultimately, we are all in this journey together and we support one another no matter the type or rarity of the disease.

As patients, we pursue positive themes to live by. These positive themes may come in the form of phrases, affirmations, books, animals, characters – anything that personally provides hope. At ​CCF’s Annual Conference in 2019, a patient named​ Marsha Goldstein shared her motto “Earrings on, lipstick on, out the door.”

Another patient, Robin Bock, provided gorgeous green earrings for patients at the conference. The earrings were attached to decorative cards with expressions about sparkle - for example: “There is time to sparkle. It is now.” “Another day, another chance to sparkle!” “Sparkle on darling.”

We at the Cholangiocarcinoma Foundation join with the National Organization for Rare Disorders to spread awareness for cholangiocarcinoma on this first Rare Cancer Day because together we are stronger.

National Organization for Rare Disorders website is https://rarediseases.org/