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…
Dystonia is a movement disorder that makes muscles contract, sometimes regularly, sometimes randomly. It can cause abnormal, often repetitive, movements, postures or both. Like others, this disease does not age…
"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…
Midnight in the Garden of Good and Evil with Addison’s disease Instills Compassion 12:00 a.m. I’m not kidding when I say it’s midnight, “in the garden of good and evil.”…
Have you been in search of a firm diagnosis for your health concerns? Are you wondering if "it" could be dystonia? If so, you know that it’s a difficult journey…
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…
El tiempo se acaba! Únase a nosotros antes de septiembre termina de hacer el noveno mes del calendario del mes de la conciencia de la distonía. Si no lo ha…
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…
The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…
Happy Fall Friday Patient Worthians! This week we have the amazing story about a woman with dystonia. We also have a video review of a man diagnosed with CVID. Additionally,…
I’ve written several articles recently on Cushing’s disease and the difference between it and Cushing’s syndrome—which I felt compelled to do because, I admit, in my own naivety, perhaps like…
When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!” That was Papa’s favorite unit of measurement.…
I want to see my kids grow up. I just want to see them a happy, that’s all. I think that goes with just about any parent; they just wanna…
We all know that receiving a rare disease diagnosis brings along a whole wave of emotions. Relief, anger and fear are just a few. It's very common for people to…
Bitartrato de cisteamina es su nombre, y salvar vidas es su juego. No es frecuente que se escucha una droga conocida como (probablemente debido a las ramificaciones legales) "salvar vidas",…
The MDS Foundation is hosting a free luncheon this November! It will be held at the Craftbar Restaurant at 900 Broadway (between 19th & 20th streets) in New York, NY.…
I am THAT mom. I don’t like or take medicine unless it’s my last resort. And the same goes for giving it to my children. To a fault, I follow…
Scientists in Armenia are partnering with their scientific counterparts at the University of California in Los Angeles to map the genome of the Armenian people. This is an important step…
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