Want some more news, events and announcements on Gaucher disease? We got 'em! [one_half] [/one_half] [one_half_last] Promising Molecule Identified as Possible Treatment for Gaucher, Parkinson's Diseases NICE Changes Mind…
You’ve heard the saying, it takes a village to raise a child? Well, as much as the fiercely independent may chafe at the suggestion, it’s true: raising, teaching, and protecting…
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…
These days Frank drives around to help others with trigeminal neuralgia. He seeks to raise awareness while comforting those who are living with the condition. Before Frank was diagnosed, he…
Addilynne is a 3-year-old with living with a disease that affects her muscle movement and strength: spinal muscular atrophy (SMA). But Amanda, her mother, states that SMA is an acronym for…
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…
Want some more news, events and announcements on Dravet syndrome? We got 'em! [one_half] [/one_half] [one_half_last] Opko Health Inc. is Closing In on a Treatment for Dravet Syndrome…
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…
As much as it pains me as a “word guy" to admit it, music is probably unparalleled among all the other arts in its ability to motivate action and change…
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…
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…
The below article was originally published on May 31st, 2017 on the International Pemphigus and Pemphigoid Foundation website, and is being republished here with permission. It wasn’t easy getting to…
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…
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