Living with PD has been the most challenging thing about my life.

When I was first diagnosed with Friedreich ataxia (FA), there were questions related to swallowing/choking on foods and liquids.

Cessation of regular infusion therapy for alpha-1 antitrypsin deficiency (AATD) can have devastating consequences.

Reflecting on my journey with Pompe disease, I’m reminded of the countless times I’ve been told that I look fine.

Since I am disabled with limb-girdle muscular dystrophy (LGMD), I was persuaded to join a transition program to prepare me for life after high school.

It’s important for people with cold agglutinin disease (CAD) to protect themselves from various types of cold when seasons change.

When you have a rare disease, like CIDP, you spend a lot of time telling people bad news.

Receiving top-quality care should be the standard for every patient with primary biliary cholangitis (PBC).

A mere 5 months ago, our world turned upside down when our grandson William was diagnosed with Duchenne muscular dystrophy (DMD).

It can be difficult for patients with alpha-1 antitrypsin deficiency (AATD) to be doubted while dealing with the burden of disease.