Published September 30, 2025 by NORD
By Melinda Bachini of the Cholangiocarcinoma Foundation In April 2012, I walked into the National Cancer Institute (NCI) as Patient 3737. While not being called by my name may be …
Continue reading “From Patient 3737 to Advocate: The Life-Changing Power of Clinical Trials”
Read morePublished September 30, 2023 by NORD
NORD is proud to share this patient story in recognition of Rare Cancer Day 2023. Learn about Rare Cancer Day here. My name is Jennifer and I am from Holly …
Continue reading “The Privilege of Access to Care: Jennifer B.’s Story in Honor of Rare Cancer Day”
Read morePublished September 30, 2022 by NORD
September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of …
Continue reading “Honoring Steven Matthews This Rare Cancer Day”
Read morePublished September 28, 2022 by NORD
Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer …
Continue reading “Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy”
Read morePublished August 30, 2022 by NORD
Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, …
Continue reading “Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)”
Read morePublished September 30, 2021 by NORD
I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion …
Continue reading “Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story”
Read morePublished September 30, 2021 by NORD
I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased …
Continue reading “Timing and Access: Katherine’s Rare Cancer Story”
Read morePublished September 30, 2021 by NORD
Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is …
Continue reading “Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story”
Read morePublished September 29, 2021 by NORD
Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is …
Continue reading “Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates”
Read morePublished September 28, 2021 by NORD
David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …
Continue reading “Head of the Herd: David Arons, National Brain Tumor Society”
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