Chordoma Foundation

Author Archives: Shannon Lozinsky

Addressing physical challenges associated with sacral chordoma: Bladder function

Sacral chordoma patients often experience side effects that impact the critical functions in the pelvis, including bowel, bladder, and sexual. While these functions are critical to the quality of every person’s life and health, they often aren’t discussed publicly. Our intent with these blog posts is to take the embarrassment out of these discussions and address real questions from real chordoma patients in a candid, direct and — we believe — helpful and hopeful manner. Continue reading

2021 Virtual Chordoma Community Conference: Ask the Experts

On July 22, a panel of chordoma experts came together for a live, 90-minute webinar to answer questions about chordoma care and treatment from more than 100 patients and caregivers. A virtual adaptation of one of the most popular sessions at our annual Chordoma Community Conferences, it was the third webinar in our 2021 Virtual Chordoma Community Conference Series. A recording of this session is now available on YouTube. Continue reading

What we’re learning from the Chordoma Survivorship Survey

Last year, as part of the Chordoma Survivorship Initiative, we called on you to tell us about the ways your life has been impacted by chordoma. Through the Chordoma Survivorship Survey we aim to capture the physical, emotional, social, and practical experiences of 1,000 or more of our community members—both survivors and co-survivors—to learn more about your needs during and after treatment, whether those needs are being met, and how we can help you live the fullest lives possible. Continue reading

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