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Archives for: September 15th, 2022

Introducing August: August’s Behçet’s Journey

Written by Julie Ostroff on September 15, 2022
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… Read More

NORD Statement on Passage of the Inflation Reduction Act

Written by Rohan Narayanan on August 12, 2022

Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:  

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals… Read More

Christina’s Lease on Life

Written by Julie Ostroff on July 1, 2022
Christina smiling in a pink sweater with McDonald's food on a table in front of her.

This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in 2015, around the time that I turned 30 and was living on my own in Cape Town.

My journey with… Read More

Giving Back to the Community: Suzy’s Rare Journey

Written by Julie Ostroff on June 24, 2022
Suzy softly smiling in front of a blue background.

I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50%… Read More