I wonder if most families have a backup plan—especially when it comes to a family crisis? I’ve been reading about aplastic anemia this summer and am absolutely baffled about what…
My dad went from playing basketball three times a week at the local YMCA to not being able to climb the stairs to bed. And for two years, the doctors…
Happy Halloween! A lot of people grow out of Halloween. I personally love any reason to celebrate. I believe that life is short and it should be enjoyed at every…
You may not know Erynn Carroll, but on 5 November 2016, she’ll be taking a step in the right direction—and you can, too! If you live anywhere near Central New…
This informative video describes in simple layman's terms what cystinosis is, how it affects the body, and how it can be treated. But the main idea I came away with…
About a year ago, at the American Academy of Rheumatologists Annual meeting, there was a report presented about tofacitinib (TOFA) for the treatment of ankylosing spondylitis (AS). Tofacitinib (sold as…
Estoy enfermo como el demonio y no quiero aguantar más! Por favor que alguien me diagnostique ?! Allá en RareConnect, un hombre llamado Blair escribe acerca de sus síntomas: pérdida…
This past September marked the 16th annual Pain Awareness Month. First established by the American Chronic Pain Association and its partner organizations, this month is an opportunity to raise awareness…
If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…
If you’re a fan of the TV show MasterChef USA, you may remember Christina Ha, the contestant that cooked her way into our hearts—and into the winner’s circle!—despite the fact…
Keenan Cahill is a YouTube sensation who just happens to have Maroteaux-Lamy syndrome. Although, after watching his channel for a half hour, he isn't letting it hold him back from…
La tecnología actual nos está llevando a nuevas (in)cómodas alturas, a un ritmo que pocos les sorprenderia. Para aquellos que están viviendo con la narcolepsia, este avión no tripulado de…
Here’s some down and dirty information about aplastic anemia, an autoimmune disease that results when the body cannot produce life-sustaining bone marrow, and doesn't create enough red and white blood cells and platelets.…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
How many people don't like going to the dentist? A lot. And how many people with Ehlers-Danlos Syndrome (EDS) hate going to the dentist? Most of them. Or at least…
One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…
During one of those “dog days of summer,” I was searching around for some inspiration; I’d been feeling blue because a friend of mine, who is in her 50s and…
The human body is a magnificent machine, and each cell has a role to play. In a way, it's like a jigsaw puzzle that ordinarily is put together perfectly. The only…
Are you ready to start a family? Or are you considering adding another child to your nest? If so, the March of Dimes shares some insight on what moms or…
Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
Carnitine palmitoyltransferase II deficiency (CPT II) is a long-winded way of describing a fatty acid oxidation disorder that prevents the body from using fat. It's caused by enzymes that aren't properly functioning,…
In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…
Are you planning on handing out candy for Halloween? If so I have a suggestion for you! This is the perfect opportunity for you to advocate for the rare disease…
PW Contributor Angie just blogged about one of the most important messages us in the rare disease world need to hear: The Power of Positivity. Read more below: Positivity is hands…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
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