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…
Dr. Josh Axe, who is a chiropractor, clinical nutritionist, and a doctor of natural medicine, is the founder of Exodus Health Center. You can read more about him and his…
Si usted ha estado sufriendo de colesterol alto con las puntuaciones tristemente lipoproteínas de baja densidad (LDL), aquí hay algunas noticias de última hora que podría salvar su vida! La…
How does a diagnosis of dystonia change your life? Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be…
Have you ever tried to run a marathon? If so, you’ll know how taxing and strenuous the race can be on your body. Now, consider this: What if you had…
What happens if your adrenal glands produce too little cortisol, and perhaps an insufficient level of aldosterone, as well? Addison's disease is the end result and it can be life-threatening.…
Great news (I hope) for people who suspect they may have a medical condition such as Cushing’s disease and are concerned about their health. A clinical trial made public in…
Do you experience pain? Weakness? Swelling? Burning sensations? Dull ache over an affected area? Oddly enough, your career may be the source of your symptoms. Not to stir panic but…
Gracias a Dios por el siglo 21! Si usted ha estado muriendo para asistir a la Cumbre de Apoyo al Paciente de de Global Genes en California, pero no hay manera de que…
Yowzaaa! You don’t want to miss the article by Jeannette Y. Wicks, RPh, MBA, FASCP about Cushing’s disease (CD). Cushing's is a rare disease that’s caused by high levels of…
Have you ever tried your hand at fundraising--especially for a rare disease like dystonia? If so, you’ll know that it’s difficult because there are so many factors involved. Without a…
When Stephen was growing up, he had no idea he'd one day be diagnosed with Common Variable Immunodeficiency (CVID). As a kid, he had a lot of trouble with ear and sinus problems.…
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