Tags Posts tagged with "rare disease"

rare disease

Hosted in part by The Transverse Myelitis Association (TMA)

$200 for members $230 for non-members There will be thought-leaders speaking, general and breakout sessions AND research updates!  

The coaches noticed teenager Amaris Tyynismaa during a 5K race as she ran past some of best distance runners in the South. They admired her long...

The goal has always been to better manage and get a diagnosis earlier for inflammatory bowel diseases like ulcerative colitis and Crohn’s disease. The newest...

Kiara Trussell thought her dreams of being a cheerleader would never happen. This is partly because Friedreich’s ataxia has made her wheelchair bound. Friedreich’s ataxia...

The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed...

Tamara is a wife, mother of two, personal trainer, yoga instructor, nutrition coach, and a blogger. Furthermore, she shares her story about having Guillain–Barré...

Twenty-three teenagers living with rare diseases worked the runway at a recent fashion show in Texas. Sixteen-year-old Maggie, living with Von Willebrand disease, was...

For more information, click here, call 215-573-6822, or e-mail Million Dollar Ride.

Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses...

Storytelling holds immense power and, thus, is one of the best ways to raise awareness of rare diseases. Hanna Smith has a career as a journalist. Over the...

The National Institute of Neurological Disorders and Stroke states Guillain-Barre syndrome (GBS) affects 1 in 100,000 people. Let that sink in. 1 in 100,000 equates to 0.001%....

About 1 in 10,000 people are affected by hereditary angioedema (HAE)--and most don't have a clue that the condition even exists. HAE can be fatal, if...

Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our...

We learn the difference between cause and effect at an early age. Before we have the words to express an idea, we learn that...

Here in the United States, we tend to put doctors on a pedestal. So much so, many of us experience a rise in blood pressure...

What does it take to change a person’s mind? Is it something as simple as showing evidence? Will it be convincing only from a...

Everything has a purpose. At least, that’s what my mom taught me. But, you know that wonderful feeling you get when you realize that...

Your child’s health care is important. Finding the right care is not always easy, especially when it comes to finding tuberous sclerosis complex care. Tuberous...

Katie and Nataleigh have been best friends since the age of three. Last July, a difficult diagnosis would bring these close friends even closer. In...

1) Know that your feelings are normal and its okay to be feeling them. It’s totally okay to be apprehensive, nervous, or even terrified. It’s...