The WDA have over 1150 participants for this year's Big WOW! happening October 1st in cities all across North America. If you haven't had a chance to sign up, now's the…
This is outstanding: However, be prepared because what I am about to say may not be popular, but it's my truth. It breaks my heart that adults with rare disease…
Maroteaux-Lamy Syndrome, also known as mucopolysaccharidosis (MPSVI), is a lysosomal storage disorder. It's one of a number of disorders that affects specific enzymes in specific locations. The job of these…
I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…
Life is hard. Life gets even harder for a woman once a month. The topic of menstruation always has been sort of taboo. I remember getting my first period. While crying on the toilet,…
Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…
Remember the Parkinson’s disease Ice Bucket Challenge mania that spread across the globe? Did you find yourself overflowing with ideas about equally awesome challenges or ways to raise awareness and…
As a self-described science nerd, I always feel a thrill when I read about a new drug reaching Phase 3 of a clinical trial. At that point, chances are very…
Being a caregiver is among the most important jobs a person can take on, but it comes with its own set of perils: isolation depression sleep deprivation So, if you…
Myasthenia gravis (MG) is a neuromuscular condition that causes weakening of the body's skeletal muscles. It's a rare disorder and there is no cure at this time, but research continues and…
Kallmann syndrome is a genetic condition caused by hypogonadotropic hypogonadism (HH), of which four separate types have been identified. People with Kallmann syndrome experience olfactory deficiencies, and puberty that is either…
Sjögren’s syndrome is an autoimmune disease that affects the moisture-producing glands in the body, including the salivary and tear glands. Very often, it's accompanied by rheumatoid arthritis. It's thought to…
People with Laron syndrome, an autosomal recessive disorder, have mutations or deletions of the GHR gene which results in a type of dwarfism. It is most commonly seen South America, in Mediterranean countries,…
Here’s a charming and ultimately optimistic little story about how a mother’s vigilance combined with the right doctors and hospitals can make a real difference in a child’s life—and how…
Aplastic anemia is both a bone and a blood disease. A person with this condition has bone marrow that no longer makes red blood cells, white blood cells, or platelets.…
Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…
It's not a happy story. Little Riley Brown beat the odds and celebrated his first birthday last April. Two months later, he passed away from the rare congenital disorder called…
What do you think of when you hear "cystic fibrosis"? Well, if you know what it is, probably nothing good. If you don't know about cystic fibrosis and you've clicked…
On February 7, 2016, an elderly man died in the foothills of the San Gabriel Mountains. Okay, but why is that remarkable? After all, elderly men and women pass away…
We have all heard the phrase knowledge is power. Everyone, at some point in their lives, has to learn how to do something. From cooking, to driving, to using the…
desarrollos recientes de Twitter en la comunidad crónica han implicado el posible descubrimiento de una nueva mascota. Karl Austin (@ Porkchop275) se encontró con una imagen de un tiburón, y…
Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…
Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides. His symptoms began on his skin, and after consulting with a colleague, he was immediately…
What if you had an inherited disorder that caused a fat called globotriaosylceramide to build up in your cells? Chances are pretty good that you'd be diagnosed with Fabry disease,…
Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…
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