People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
A friend of mine has a disease that at one time carried the name of a Nazi doctor (it was only changed about 2-3 years ago!). So I suppose “Schnitzler…
“In the pipeline” are words that make the heartstrings of anyone living with a chronic, hard-to-treat disease go twanggggg. It’s Big Pharma lingo for “drugs under development,” and generally signals…
Press release: 12th October 2016 Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends]. [It] highlights the struggle faced by people…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
El Consejo Nacional de Salud y la Alianza Genética están afirmando la necesidad de una mayor participación de los pacientes y la incorporación de las perspectivas de los pacientes…
As someone who was raised to have good manners, you can bet your bottom dollar that my own children do too. So I was both ashamed and proud of a…
Sarcoidosis is one of the rare diseases that makes me angry. A good friend of mine has it and it has rendered a once vibrant, active woman into one who…
When I think of creativity and crafty talent, Etsy is one of my first fleeting thoughts. I view all the shops on the website, and wonder, “How I wish I…
Al igual que muchos con angioedema hereditario, esta familia no sabía que la enfermedad estaba afectando a varios de sus miembros hasta que uno de los miembros, Ken, fue diagnosticado…
ATTENTION all of you go-getters and Sherlock Holmes peeps! I’m calling on my investigative peeps for some support! Here’s a challenge for ya to help the Cushing’s disease (and Cushing’s…
Everyone wants to know the secret to living longer. The Fountain of Youth. The Elixir of Life. The Philosopher's Stone. Well, researchers may have found the answer and they have…
For me, a good book has the ability to transport me to another place. I often find myself escaping within the pages to another world created by the author. Through…
You may or may not know that Cushing’s disease can be challenging to diagnose because no two cases are exactly the same. People can experience symptoms or even a combination…
Los padres que aman a sus hijos pueden apreciar cuando los tratamientos están disponibles para llevar la esperanza y la curación cuando sus crías están enfermos ... El 17 de…
Here's a riddle to start your day: What do acromegaly, Cushing's disease, and epidermolysis bullosa have in common? If you guessed that they all have treatments owned by a small pharma…
Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…
I have been told that one of my first words spoken was "Why?" Ever inquisitive, I have always had a fascination with the how and why. As a child I…
"characteristicas de una frente protuberante una mandibula cuadrada encontrados en un esqueleto de 3,800 años de edad" fue reportado por Western Digs. Cada característica apunta a una causa probable: la…
Niveles altos de colesterol, particularmente colesterol de lipoproteínas de baja densidad (LDL-C) es un problema para muchas personas, pero ninguno más que los que tienen la hipercolesterolemia condición heredada genéticamente…
Call me crazy, but I’m pretty sure September was trying to kill me. The whirlwind romance with summer is over. All the front displays of the supercenters showcase the brilliantly…
I've found it hard to find blogs and first person accounts of Behcet's disease that aren't just miserable. Maybe it's because I'm really lucky and my disease isn't as bad…
You're doing everything right for your newborn baby, including having a heel stick so your child can be tested for a host of genetic abnormalities. Life is good. Weeks later,…
RareConnect explica la vida de Annie Kwakkel que nació con cistinosis, una enfermedad genética que afecta aproxima a 1 en 100,00 a 200,000 recién nacidos en todo el mundo. Hoy…
Sabemos que la sobre exposición al sol provoca una situación grave quemadura o sus cortezas, pero ¿sabía usted que el sol puede ser especialmente peligroso para las personas con una…
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