Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms. We need more…
You recently learned that your child has inflammatory bowel disease (IBD). Now you’re taking an important step: learning about the condition, how it’s treated, and how your child can learn…
Homocystinuria is an extremely rare disorder. It is estimated that only 1 in 344,000 people in the world have it. Homocystinuria is a genetically inherited. This means the child’s parents…
Children need exercise. Not only for the health benefits but for the social benefits too. Playing games like hide-and-go-seek and tag, and participating in community sports like soccer and swimming,…
Let's talk about Mount Everest. It sits on the border between Nepal and China and its peak is 29,029 feet above sea level--which makes it the highest mountain on earth.…
Every spring, as the weather warms up, millions of Americans strap on their hiking boots, pack their tents, and head out into the woods for a weekend of fun and…
Living in fear—I don’t know how some people do it. I’m not talking about the shrieks from bugs or snakes. God, both of them freak me out. I’m not referring…
The Susan Skinner Memorial Fund (SSMF) Scholarship was created to help foster the education of the newest generation of bleeding disorder advocates and researchers. Two scholarships are being offered this…
Shortly after celebrating baby Eli’s birth, his family got the shocking news that Eli had a fatal disease called spinal muscular atrophy (SMA). Spinal muscular atrophy can take away Eli’s…
Earlier this week, you may not have seen our reporting on the latest move by China for the rare community. So in case you missed it... With the largest population…
Guillain-Barre syndrome, or GBS, occurs when the body's immune system attacks the nerves. People will usually notice tingling and weakness in their arms and legs. As annoying as that can feel,…
According to recent research, the Nigerian federal government believes nutrition is another way to approach treating and potentially curing Sickle Cell Anemia. Dr. Ogbonnaya Onu, Minister of Science and Technology, explained…
This year, there were about 5,000 runners in the Myrtle Beach Marathon. Trigeminal neuralgia (TN) didn't stop Greenville, North Carolina’s Melvin Coleman from being among those who ran relay races,…
Want some more news, events and announcements on Beta Thalassemia? We got 'em! [one_half] [/one_half] [one_half_last] Atherosclerwhat? Pay Attention to Your Arteries if You Have Thalassemia Iron Supplements…
Leah Alstin has a rare disease called Friedreich’s ataxia. Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms…
Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a…
Chances are if you have a primary immunodeficiency disorder, you don’t live near other teens with your same diagnosis. No one else gets what you’re going through. You may have…
Ovarian cancer is the most deadly form of reproductive organ cancers. Why? Because it's usually not diagnosed until it has reached the late stages because the symptoms are often overlooked,…
Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…
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…
Positive Thoughts Kim Frederickson was diagnosed with pulmonary fibrosis (PF) in 2014. She has used her skills as an author to share her story. Her motto is to focus on…
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…
Sam Edwards was always exhausted. No matter how many hours of sleep he would get, he just could not stay awake. But as a professional race car driver, he needed…
Medicine is expensive. Most patients aren’t millionaires. It’s disheartening that treatments which could be so beneficial are out of reach for so many. It’s even more disheartening when their production…
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