Have you ever heard of “ex vivo” gene therapy? If you haven't, it means removing some cells, modifying them, and putting them back in. The goal? Curing the diseases that…
The Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association was established in 1996 to serve and support all those affected by PKAN, PLAN, MPAN, BPAN, and CoPAN. Of these, PKAN or…
Bronchopulmonary dysplasia, or BPD, is a chronic lung disease that most commonly occurs in premature infants and is caused by a reaction to being on mechanical ventilation, or from being on…
I think most people experience eye problems at one point or another. Maybe your child came home with "pink eye," and before long, everyone in the household had itchy, burning…
The Transverse Myelitis Association is a nonprofit founded by individuals whose passion for advocating for the disorder is deep-seated. All five of the families who have worked to establish it…
You know the old adage that if you give someone an inch, they’ll take a mile? While it is highly unlikely that whoever this “someone” is will take 63,360 times…
For anyone out there who has climbed a mountain, you know one of the universal truths of all monumental tasks: A mountain always looks bigger when you’re standing at the…
Second grade. So big but so little. An academic year filled with spelling and vocabulary words, simple math fast facts, and learning how to use a keyboard. And maybe at…
Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using fear to serve you in…
Look closely. A long shadow may be clouding your future. It's the shadow cast by the pain and suffering in your past—the parent who wasn't there, the boss who humiliated…
Who would have thought that a classic novel came about because a student accidentally skipped a page in his test booklet for a final exam essay? The person charged with…
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…
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…
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…
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…
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