Rare Disease

“I Thought It Was Cancer” – Why Listening to Your Body Can Save Your Life

When Damon first noticed swelling in his toes in March 2022, he figured it was nothing—maybe just fatigue from a long day. But by the next ... Read More

‘People See the Wheelchair, Not Me’ — I’m Telling My True Story

Spinal muscular atrophy (SMA) is a rare genetic condition that affects the muscles people use every day to move, breathe, and even swallow. ... Read More

I’m 27 With Stage 4 Cancer. Here’s Why I Advocate for Clinical Trials

If you had told me a few years ago that I'd be battling stage 4 cancer as a young Black woman in my 20s, I never would have believed you. ... Read More

Why Clinical Trials Matter As a Black Woman With Myasthenia Gravis: “I Paved The Way For The Next Person”

Clinical trials are crucial for advancing medical research and developing new treatments for diseases. However, Black Americans have ... Read More

I Have a Rare Disease. Here’s Why I Chose to Do a Clinical Trial as a Black Woman

My name is Tasha White, and I was diagnosed with myasthenia gravis at the young age of six years old. Myasthenia gravis, or MG for short, is ... Read More

How Two Sisters are Changing the Conversation on Rare Diseases

Rare diseases often leave those diagnosed feeling isolated, misunderstood, and searching for answers. Cheryl and Vera, two sisters bound by ... Read More

Yankees Legend on Father’s Rare Disease: ‘We Didn’t Know What Was Wrong’

Bernie Williams, a former Major League Baseball star turned advocate, has made a lasting impact on the lives of many through his work in ... Read More

A Dermatologist Offers Tips On Recognizing the Mpox Rash

Anyone who gets a new, unexplained skin rash should call their doctor and get medical care in case it's Mpox (formerly monkeypox), public ... Read More

I’ve Had 18 Surgeries, But I’m Still Standing Strong: ‘Faith Is My Anchor’

Antwan Winkfield’s earliest memories are shrouded in the stories his family told him. As a baby, he was often inconsolable, and his mother ... Read More

This Sarcoma Clinical Trial Reduces Risk of Relapse by 43%

A glimmer of hope emerged for patients with sarcoma in a recent clinical trial. Researchers funded by Stand Up To Cancer (SU2C) achieved a ... Read More

Sarcoidosis Affects Black Americans More Than Others. Clinical Trials Can Change That.

The Foundation for Sarcoidosis Research (FSR) has launched the Coalition for Clinical Trial Equity to tackle health disparities related to ... Read More