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September 30, 2022

TOPIC: Voices of Rare Cancer, Patient Stories

Honoring Steven Matthews This Rare Cancer Day

Posted at September 9, 2022 08:35 am by Rohan Narayanan

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 the rare cancer community – learn more.

The Chondrosarcoma Foundation is sharing the story of firefighter Steven Mathews in honor of Rare Cancer Day.

Steven Allen Mathews was… Read More

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September 28, 2022

TOPIC: Voices of Rare Cancer, Press Releases

Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Posted at September 9, 2022 08:30 am by Rohan Narayanan

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 Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients with rare cancers face and to unify individuals living with rare cancers for… Read More

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September 16, 2022

TOPIC: Patient Stories

Unanswered Questions: Leah’s Rare Cancer Story

Posted at September 9, 2022 08:15 am by Julie Ostroff

My life has been completely altered by rare diseases, specifically rare cancer. During my pregnancy with my 2nd child, I had stage IV sarcoma. Doctors were unable to tell me the effect it had on my baby or how long I had to live. I had so many unanswered questions. 

Side effects from the treatment left me… Read More

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September 15, 2022

TOPIC: Patient Stories

Introducing August: August’s Behçet’s Journey

Posted at September 9, 2022 04:15 pm by Julie Ostroff
August smiling at camera in striped shirt.

Introducing August

My name is August Rocha, and I am an adopted, Chinese-American, transgender TikTok content creator living with Behçet’s disease. While I’ve been symptomatic all my life, I wasn’t diagnosed with Behçet’s until age 21, in the summer of 2016. 

Behçet’s disease is a rare form of vasculitis that causes inflammation in the blood vessels. I’ll… Read More

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September 8, 2022

TOPIC: Patient Stories

Rare Voices: NORD and the Galactosemia Foundation Host Groundbreaking Meeting with FDA 

Posted at September 9, 2022 08:00 am by Rohan Narayanan

For the first time in history, the Galactosemia community came together for a historic meeting to share their experiences with the disease and treatments – and hopes for the future – with the US Food and Drug Administration (FDA). NORD is proud to be one of many patient organizations to coordinate and host externally led Patient Focused Drug… Read More

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Alone we are rare. Together we are strong.®