If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…
Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…
Se les ve en todas partes - a pesar de que se ven fuera de lugar en la tienda de comestibles, o en el cine, o - peor aún -…
Cuando era una niña, Remi Savioz quería una cosa. Y no, no era un cachorro, una bicicleta, o incluso un viaje a Disneyland ... Remi lo que quería era una…
El mundo le gusta una buena historia. Y yo estoy a favor de darle a la gente sus merecidas "felicidades" cuando han enfrentar a la adversidad y logró algo fantástico.…
Is hosting a fundraising event meant to help people who have bone marrow failure diseases, such as aplastic anemia, at the end of October brilliant or insensitive? During the last…
There is a new Phase 3 Clinical that is currently recruiting MDS patients, take a look at the info below if you're interested. For more info and resources about MDS…
I recently read an article about a 22-year-old man from Utah who’d just returned from a missionary service in Brazil and was diagnosed with aplastic anemia. This is so sad…
I read an interesting article posted on Living the Diagnosis by Vicky Warren. I’ve got to applaud her for sheading more light on Ehlers-Danlos syndrome (EDS), a genetic rare disease/syndrome.…
Don't miss the last three MDS Patient & Family Forums in 2016! All three events are free, sponsored by The MDS Foundation. Topics to be covered include: Therapies and Patient…
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
Patient Worthy asistió al foro anual de la Fundación EveryLife el pasado martes en Washington, DC. Fue un taller de un día completo acerca de por qué la incorporación de…
Moving up the ranks in a disease state profile may be difficult, but not impossible. There are tried and tested ways to heighten awareness and get the dystonia message out…
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…
Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…
I have been living with Cystic Fibrosis (CF) since birth. I was lucky that I was diagnosed early and started on medicine straight away. One in every 25 people carry the…
Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…
In the immunodeficiency department, Cat Latuszek hit the unfortunate jackpot. After a lifetime of ear infections, she was finally diagnosed with Common Variable Immune Deficiency, or CVID, at the age…
Ir en su programa de radio promedio sitio web a la salida de la BIOS de sus anfitriones favoritos, poniendo una cara de esos tonos frescos cobardes que escuchas en…
“Healing is a matter of time, but it is sometimes also a matter of opportunity.” – Hippocrates, Greek physician known as “The Father of Modern Medicine” When you’ve been diagnosed…
I recently read an article about a little boy who’d been diagnosed with aplastic anemia, a mysterious and very serious illness that can strike adults as well as children. It’s…
If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there's…
I am beyond excited to report I have begun the process of recovery from late stage, chronic Lyme disease. A year ago, I was reading through articles, clicking on everything…
There is something inherently unfair about seeing your child get sick, and almost every parent in the world would do anything possible to make things better. It can be even…
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