What’s the biggest nightmare of any parent? Is it the fear of a kidnapper? Is it some horrible, lifelong medical condition that needs constant medicine or repeated hospitalization? Is it…
One of my biggest struggles used to be living without a diagnosis and trying to figure out what to say to people. What was I supposed to say when I…
In India, one in 40 people carry the gene for Spinal Muscular Atrophy. If both parents carry the gene, then there is a 25 percent chance that the child may…
Be on the lookout for this amazing sickle cell anemia blog! Caregivers, friends, family, and patients of sickle cell, there is a new blog committed to raising awareness about sickle…
Malik, 21, has been living with sickle cell anemia since he was born. Sickle cell anemia is a disease in which the body makes red blood cells in an abnormal…
We all have those memories of Christmas time when we wanted that one toy so badly. We would have gladly given an arm or a finger to get that gaming…
Okay, I’m going to be perfectly honest: I don’t quite know what to make of this. On the one hand, you have some excellent news for people living with mucopolysaccharidosis…
It’s so easy to nitpick and find things wrong with organizations. It’s much harder to see what it is they're doing that's good. One particularly fun punching bag is the United…
Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem. It leads to weakness and muscle wasting that affects a baby's ability…
One of the hardest parts of living with a rare or chronic condition such as hereditary angioedema (HAE) is being told “but you don’t look sick!”—even when you feel like…
Our children bring us so much laughter and joy. Spending lots of quality time with our kids is proven to be good therapy; they benefit from wholesome interaction with their…
Behcet's disease falls under the umbrella of autoimmune diseases and disorders. It affects approximately 400 of 100,000 people in Turkey, and is also commonly found in the Middle East. It…
Did you ever get that weird feeling when you've arrived at the party, but almost all the guests have already departed? Yes, you are definitely late, late, late. That's how I feel…
Have you ever heard of the children’s book, Harold and the Purple Crayon? It’s about a little boy who draws the things he wants to see with his purple crayon,…
Leathia Boyd is a 38-year-old woman, mother, and wife living with sickle cell anemia. She's also an advocate and has been one for more than six years. It all started when she joined…
Recently diagnosed with a rare disease and don’t know where to turn for more information? Have a loved one with a rare disease and struggling to understand the science behind…
I like to say that my brother has an addictive personality. I introduced him to George R. R. Martin’s A Song of Ice and Fire series, and he read the four…
Imagine this: two elementary students are in the restroom at school, smoking a bowl. And then, the principal walks in. Rather than flying off the handle, the principal smiles and…
June-September is wedding season. One of the most frequented topics of conversation among friends is weddings. It seems I'm at a stage when no matter who I'm with or what…
Dancers have amazing muscle control. Through hard work and practice, they learn to make the tiniest movements precisely. So imagine the terror former dancer Emily Thompson, then only 20, felt…
Primary Immunodeficiency (PI) can be very hard to explain to people and very hard to understand. The thing is, most of the time we look healthy on the outside. But…
If you have pulmonary arterial hypertension (PAH), you know it's a rare form of high blood pressure. It affects the arteries that run from the heart through the lungs, causing those…
If you had the opportunity to make a wish, what would it be? Would it change if your child had Lennox-Gastaut? I can think of a few wishes I'd make,…
One of the most popular brands of literature (yes, people still buy books; some even buy them the old fashion way at a bookstore) is the standby classic: mystery. It…
Wilson disease is a rare genetic disorder. What does it cause? Well, copper begins to build up in the liver and brain, sometimes to a dangerous degree. One young boy in India…
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