Articles, Events, & Opportunities

As a parent caregiver raising a child with a rare disease, my journey has been filled with different challenges, victories, and profound learning experiences. One of the most enlightening aspects...

Living with a genetic condition like congenital adrenal hyperplasia (CAH) can pose unique challenges. But CAH does not have to define a person’s life. With the right treatment plan, most...

The Fill Your Cup Giveaway is now closed. Thank you for your interest! February 29th is the the rarest date of all, so it is no surprise that this year...

On my journey, celebrating milestones isn't just about the milestone itself. It's also about our family's journey leading up to it. It's the hours fighting with insurance to get therapies...

Motor neuron diseases (MNDs) are a class of diseases that affect certain important cells. These cells, called motor neurons, control the muscles that help with movement. Your body uses motor...

Have you heard of state Medicaid programs that allow a family member or friend to become a paid caregiver? New Jersey's Personal Preference Program is a Medicaid-based program that allows...

I started my medical trauma healing quest in the early 2000s, but since 2022, I have made a consistent effort. I have learned a lot along the way. I am...

January marks the awareness day for one of my rare diseases, Moebius syndrome. Awareness is sometimes a funny concept when it comes to rare diseases: there are over 7,000 identified...

If you or a family member are a rare disease patient, chances are it took quite some time to receive an accurate diagnosis. Once you received your diagnosis, perhaps your...

I will never forget the day I saw what the more common characteristics of someone diagnosed with MAC lung disease were because it ALL described me at the time I...

I have only been living with narcolepsy since my college years. When I discovered what kind of rare disease I had, at first, I was genuinely confused. I didn't know...

Goal setting is a topic covered A LOT, and it's pretty straightforward, right? Set a goal, break it down, and work on the steps to achieve that goal. Whenever I...

Reflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought I would tread. It was the year...

Through my many healthcare experiences due to having cystic fibrosis, I have experienced the power that lies in self-advocating for my health in the clinic setting. My passion is to empower...

I'm not a fan of New Year's resolutions. I'm sure many of us have seen or done this before – we make big goals that are not necessarily attainable, and...

Reaching complete physical, mental, and emotional exhaustion is a serious threat that can occur in a variety of life situations – not just in the career field. Living with chronic...

I remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there was an obvious difference between my son and...

As a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and school. As we prepare for her first high...

Living with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health. I live with narcolepsy...

If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them busy. Modifying everyday activities based on your child's...