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.