Happy Independence Day Week! Being Rare in America
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
There are 30 million people in America with a rare disease. That is about 1 in 10, or 10%, of the population. Keep on fighting the good fight, every post…
In December 2013, the well-respected medical journal, Nature, reported that narcolepsy had been confirmed to be an autoimmune disease. In autoimmune diseases, the body's normal immune system response goes wack…
"Hardships often prepare ordinary people for an extraordinary destiny." -C.S. Lewis People with rare diseases are not ordinary people. The hardships they endure turn them into extraordinary individuals because they…
When Angela Clarke was just hitting the teenage years, she craved the attention wearing high heels would bring her--plus, being short in stature, she saw them as a quick fix to…
If you think about the definition of rare, you realize just how accurately it describes people with rare diseases. You are one in a million and you are precious to…
People with ankylosing spondylitis (AS) already have a lot on their plates trying to cope with the symptoms of this inflammatory disorder that mainly affects the spine. In severe cases, vertebrae…
Happy Independence Day! For those of you in the United States, usually the Fourth of July weekend is a filled with fun celebrations and family. But what about those of…
On the day Remi Savioz was born, it seemed that the world had welcomed a perfectly normal healthy baby girl. On day three, that illusion was shattered when she began…
Con siete millones de personas en el mundo, hay mucho que nos hace diferentes -- riqueza, la ubicación geográfica, la familia, los intereses. Pero nuestros puntos en común? El ecualizador…