Articles, Events, & Opportunities

My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and not-so-slight bleeding into that joint over nearly 5...

As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely hard. The general public is not well-educated on...

Can you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack of resources, treatment options, and support can leave...

I have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother (who has the same rare disease as me)...

Caring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic condition without a cure. But with the right...

As an advocate, caregiver, and mom, I am guilty of running on autopilot and failing to acknowledge when my body and mind are extremely tired. Because what choice do I...

Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We...

Finding the right doctor can be challenging for anyone, but it seems especially challenging for those of us in the rare disease community who are looking for specialists to help...

When I became a mother at 26 years old and my husband a father at 27 years old, we learned that the future ahead of us would be characterized by...

Many general medical practitioners are not educated about rare diseases. This can make it difficult for people with rare diseases to get access to diagnosis and treatment. It can also...

Primary biliary cholangitis (PBC) is a chronic condition that affects the liver. Chronic means that it lasts for life. It is also progressive, which means it can get worse over...

My 3 children are nothing alike. My oldest is a sweet and laid-back growing boy who is medically complex and living with a rare disease. My middle is a high-energy...

Congenital adrenal hyperplasia (CAH) is a group of rare genetic disorders that affect the adrenal glands. The adrenal glands are 2 walnut-sized organs located above the kidneys. They produce essential...

Most of us are familiar with the term "elevator pitch." An elevator pitch is sharing one's story with another person and requesting action in approximately 5 minutes or less. But...

I recently wrote an article, Groin Older: Aging With Hemophilia, where I described my life with the bleeding disorder, hemophilia. My first pulled groin muscle was the star of the...

Getting diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in my late 20s had an impact on the way I see myself. hEDS is a genetic disease, and I was born with...

I admit that I cannot resist the rare disease zebra branding. It's cute; zebras are close enough to horses to make my horse girl self happy, and unlike other rather...

Recently, I tried a new form of therapy: hypnotherapy.  After 5 and a half years of counseling, I decided that while it was incredibly helpful, I also needed another form...

When my son originally got his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At first, I was hesitant to join because...

Being a caregiver for someone with a rare disease is an incredibly rewarding yet demanding role. Learning how to advocate for my daughter gave me a sense of purpose and...