Want some more news, events and announcements on CGD? We got 'em! [one_half] [/one_half] [one_half_last] Testing New CGD Treatments Just Got Easier [/one_half_last] [one_half] [/one_half] [one_half_last] The Most…
Charis Hill believes that changes to the Affordable Care Act (ACA) may be the difference between living and dying. Charis currently gets insurance due to the ACA. She is worried…
You know that feeling when someone says a word that you don’t understand? It happens to people all the time. It might be your accountant right before tax time. It…
About 1 in 3,000 babies are born with gastroschisis every year. Elliotte Sargent was born in September 2016 and is one of those babies. While in the womb, she was…
Many of us, especially men, define ourselves by the job we have. Don’t believe me? Ask a guy who he is. He will almost certainly answer with his job title.…
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 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…
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…
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…
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…
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…
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…
I felt the cold sweat racing down my back. I felt like I was drowning, but there was no water around. By this point in my life, I had experienced…
Cerebral palsy (CP) is caused by brain lesions that are non-progressive, meaning the lesions don't cause the brain to further deteriorate. It causes impairment of motor function—the ability to control motion…
Parkinson’s disease can effect each individual differently. Robin Morgan PhD, seeks to determine the main differences between woman and men experiencing Parkinson’s. Based on her studies, she states that women with Parkinson's…
Eryn Gaffney, now 20, was diagnosed with Tourette syndrome at the age of nine. Tourette syndrome occurs as a result of the basal ganglia misfiring. This is the part of…
On May 12th, 2017 the University of Rochester Medical Center hosted the first Technology and Rare Neurological Diseases Symposium (TRNDS). It successfully brought together patients, researchers, leaders in health technologies,…
I recently read an article that was focused on amyotrophic lateral sclerosis (ALS) and how cases of this degenerative motor-neuron disease are expected to increase as the world population ages.…
Inspiration can be found in almost anything. Frequently, it’s a famous person from history who has overcome adversity to achieve some amazing feat. Sometimes it’s the busy person who finds…
It doesn’t seem possible to have a conversation these days without it devolving into some sort of partisan shouting match will little hope of resolution. Issues that we might think…
I’ve had one hellofa tough day, but stopped abruptly with an attitude shift to feel inspired after reading an uplifting article which I know will inspire tons of moms in…
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