Articles, Events, & Opportunities

"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...

UPDATE: Due to unforeseen circumstances, this event has been postponed. We will update this page once a new date is finalized.To stay in the know about this and future events...

Rare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we connect with others with our same rare disease...

As a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a day at the spa could wash away my...

Keeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With organized medical records, you can track changes and...

Even if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new to the AOSD world or wanting to understand...

It's that special day of the year again. You know the one. The day when all of your friends bestow many a gift and regale you with all the knowledge...

As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with narcolepsy is slow, with at least 2 scheduled...

A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming...

In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins cause too much inflammation. Over time, this can...

Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed. This is likely most understandable amongst the rare...

Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make visits to the emergency room, urgent care center...