Stories

My daughter was born with a rare form of muscular dystrophy called nemaline myopathy. She was three before we knew something was different with her. She was just a little...

I’ve always fallen down since childhood. Doctors didn’t know what I had. Never had enough strength to play kickball. Until I could. And then I couldn’t. I was smaller than...

I was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown. It causes unbearably itchy papules which dominate life preventing normal...

The year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I didn’t have the energy to make it to...

I've learned a lot about the medical profession over the years and here in the west, they are trained to look at numbers on tests for everything. If your numbers...

● Lift up your right arm, and now lift up your left. Lower them again. ● Tip your head up. Look up as high as you can. Move your eyes...

At RareDisease.net, we believe that we are stronger together than we are alone. Living with or caring for someone with a rare disease can be a challenge, but the more...