The term "rare disease" sounds unfamiliar or irrelevant to most people, as it is seen as something that affects a small minority. The shocking reality is that such diseases are not so rare if ...

it will be critical to ensure that rare disease patients are not left behind. Of the roughly 10,000 rare diseases discovered so far, 95% of them have no FDA-approved treatment or cure, which means ...

Eponyms — diseases named after a person — can cause serious confusion. That is particularly true in one rare disease ...

While PH Awareness Month is a great opportunity to connect and educate, rare disease advocacy is columnist Jen Cueva's passion all year.

In these cases, the rare disease affects not only the child diagnosed, but also their families, friends, and caregivers. Due to the genetic component of these disorders, more than one child within ...

For 7-year-old Emma, the rage is a symptom of Batten disease, the fatal, rare illness with which she was diagnosed at age 4. “But I have to take the book away. She's not willing to eat or drink ...

We understand the profound physical and financial impacts of rare diseases — not only on individuals, but on their families ...

The symptoms usually indicate a differential diagnosis of respiratory, cardiac, gastrointestinal, neurological, and infectious disease ... rare. Collectively, however, EM disorders are not ...

The University of Minnesota’s annual Rare Disease Day seminar this year ... “Our restorations are not often covered by medical insurance plans, so we end up getting bills for like $100,000 in order to ...

In some cases the diseases are curable, if caught early. Screening newborn babies for these rare diseases involves ... up for the screening test. “Do not hesitate. If you can save your child's ...

so it’s not common for adults to get it. But if you’re pregnant and are exposed to fifth disease, speak with your doctor, because there is a rare risk of miscarriage.

The Oxford-Harrington Rare Disease Centre is a partnership ... our loss is still so raw. “But the steps we are taking now means that, in the not-too-distant future, families like ours will ...