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Misconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage health conditions. This occurs not just outside the...

Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from you. To learn more about the challenges of...

Young people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not many places exist for teens and caregivers to...

In the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun...

"Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please...

In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that. My...

I wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this...

Living with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And most doctors in the emergency room (ER) are...

Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards...

I didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression, anxiety, and anger as part of my medical...

A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known about them. A survey by the National Organization...

"What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this point, the Social Security agent kindly explained to...

While I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting boundaries and one's well-being. I spent most of...

I have always strived to see the silver linings or the good in every situation. My immune deficiency diagnosis of hyper IgE syndrome came from a near-death experience. I was...

Zebras are part of the equine family, but they have never been truly domesticated. While they are kept in zoos, wild animal parks, and safaris, they have never let themselves...

I used to hate any type of doctor's appointment. Having been born with hemophilia, many of my earliest trips to the hospital resulted from a nosebleed or some type of...

Editor's Note: This article was written by Halimat Olaniyan and originally appeared on our partner site Sickle-Cell.com. I’m not very good at asking for help when I’m sick. It’s ironic...

I talked with an old friend from high school who just found out he has a rare disease about how much our partners and caregivers mean to us. First, we...

When your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the unexpected happens, which could mean a trip to...

My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents from Social Security that might explain what to...