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September 30, 2022

TOPIC: Patient Stories, Voices of Rare Cancer

Honoring Steven Matthews This Rare Cancer Day

Posted 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: Press Releases, Voices of Rare Cancer

Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Posted 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 21, 2022

TOPIC: Press Releases, Research

NORD Opens Applications for Three New Rare Disease Research Grants

Posted by Rohan Narayanan

Since 1989, NORD has awarded over 200 grants totaling over $9 million in approved funding 

September 21, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced new requests for proposal (RFP) for grant funding through NORD’s Jayne Holtzer Rare Disease Research Grants Program. NORD provides grants for the study of diseases for… Read More

September 15, 2022

TOPIC: Patient Stories

Introducing August: August’s Behçet’s Journey

Posted 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