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 strides as she ran faster than…
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 study at the University of…
Have you ever heard that we only use 10% of our brains? How about the fact that lightning never strikes the same place twice? Maybe you know the five-second rule.…
The MDS Foundation is hosting another wonderful event! Where: Memorial Sloan-Kettering Cancer Center Concourse Conference Room 480 Red Hill Road Middletown, NJ 07748 Presenters: Virginia Klimek, MD Kelley Anderson, RN…
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 is a progressive neurological condition.…
The Chinese government is set to publish its first comprehensive list of rare diseases, with the aim to help policymakers improve diagnoses and speed up drug approvals. This comes on…
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 Syndrome. When Tamara received her Guillain–Barré Syndrome…
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 one of the models for the…
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 living with CRPS and other…
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 years, she has interviewed people…
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%. Compare that to the…
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 not treated. Almost every family…
Moms: The ultimate multitaskers. Whether they're stay-at-home moms or working mom, these strong ladies have a way of getting stuff done, come hell or high water - or a chronic…
Think back: Remember those halcyon days of 2014 when we spent the summer dumping buckets of ice water over our heads and challenging our friends to do it or pay…
We learn the difference between cause and effect at an early age. Before we have the words to express an idea, we learn that when our bellies hurt, we cry…
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 in the office. There’s even a…
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 certain source? Do people only change…
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 something can be used for more…
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 sclerosis complex (TSC) is a…
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 July, Nataleigh had a son, Laigan.…
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 a scary thing you’re going…
Evidation Health’s goal is to make it easier for you to share your symptoms with the professionals who most need to know. Their program, in partnership with others, enables patients…
It’s always exciting when the Food and Drug Administration (FDA) gives a new drug its approval, especially for rare diseases like tuberous sclerosis complex (TSC). This is the culmination of…
The Association of Sickle Cell, Lower Chattahoochee Region (ASCLCR) is an organization dedicated to funding sickle cell research and aiding all those affected by the disease within the eight counties…
The word “marathon” has become so ubiquitous that it is almost cliché. When people hear the word, they think of their favorite reality TV show played for 12 consecutive hours…
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