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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

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

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

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

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