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…
Saturday September 24 is FH (familial hypercholesterolemia) Awareness Day, and it couldn't come soon enough. That's because, according to new research published in Circulation (the journal of the American Heart Association),…
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.…
The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…
Esté atento a WebMD. Google está a punto de dejarte retorciéndo en el piso... Usted puede creer que uno de cada 20 búsquedas de Google están basados en la…
Welcome back Patient Worthians! Are you looking forward to 2017? Well you should be if you have HAE! Ever heard of Botox? If you have, you probably think of Hollywood…
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…
Cuando la Cámara de Representantes aprobó una ley innovadora, Ley de Curas siglo 21, en un voto de 344-77 voto, la decisión se sentía como un desfibrilador, el despliegue…
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…
Most people don't associate the word "fever" with something chronic. They think of it in terms of a flu or passing infection. You've heard the phrase: "Feed a cold. Starve a…
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…
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…
On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…
La mayoría de los padres están ansiosos de que las primeras palabras de su hijo. Pero como el Daily Mail en el Reino Unido informa, Stevie y David Taylor esperaron…
I recently posted an article on aplastic anemia in response to another post that I’d read. I felt compelled to mention that a dear friend of mine was diagnosed with…
Botox may be the new fresh face headliner in the therapeutic industry. Who knew? We see and read conversations about Botox more commonly in top women’s magazines, the likes of Cosmopolitan,…
If you’re the parent of a small child—or any size or age child, really—here’s a good reminder of why you should hold your baby a little closer and be thankful…
You know that saying people use when someone’s facing a flood of crises? “God doesn’t give you more than you can handle?” Depending on your point of view that may…
Nadie sabe los peligros del colesterol malo mejor que los pacientes con hipercolesterolemia familiar (HF). De acuerdo con la Fundación FH, hay dos formas de FH. 1) HeFH, y 2)…
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,…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
