On June 2, we hosted the second webinar in our 2021 Virtual Chordoma Community Conference (CCC) Series: entitled Dealing with cancer-related fatigue. Fatigue is an extreme feeling of tiredness or lack of energy not caused by a specific activity, and it is one of the most common side effects of cancer treatment. From responses to our ongoing Chordoma Survivorship Survey, we know that nearly 60 percent of chordoma patients and survivors have experienced fatigue since being treated. Continue reading

On April 7, we hosted the first webinar in this year’s Virtual Chordoma Community Conference (CCC) Series, entitled Options for Comprehensive Pain Management. We know from your responses to our ongoing Chordoma Survivorship Survey that most chordoma patients and survivors experience pain at some point along their journey with the disease and, for many, that pain can be chronic or long-lasting. But you don’t have to accept pain as a normal part of having chordoma. Pain can be managed, and it is your right to get treatment for it. Continue reading

In 2021, we are excited to host a Virtual Chordoma Community Conference (CCC) Series featuring webinars about some of the most common quality of life challenges you face. Continue reading

On June 8th, more than 90 patients and caregivers from 21 states gathered in Chicago for our 2019 Chordoma Community … Continue reading

Our 2018 International Chordoma Community Conference in Boston brought together more than 100 patients, family members, doctors, and researchers from … Continue reading