Q: What is Gaucher Disease? Gaucher's is a genetic disorder with varying symptoms that range from mild to severe physically as well as neurologically. People with the Gaucher have a…
There is an area in northern Minnesota given the general term or name of the Boundary Waters; it’s a cluster of many islands within a large body of water that…
Aquí en PatientWorthy, creemos que la risa puede ser la mejor medicina. Humor irónico es sorta lo nuestro. Pero para aquellos que ofenden fácilmente, o tal vez incluso moderadamente intolerante,…
Candace recogió sus cartas, lanzaron "Oceans" en el fondo, y apretó el juego cuando comenzó a grabar un video explicativo de su rara enfermedad con frecuencia mal entendida, de Inmunodeficiencia…
Normalmente en #mememondays, ofrecemos edificante, divertido, ya veces sólo directamente a los memes de puntos que puede compartir todo el universo social de #mondaymotivation.This week we are shaking it up!…
On Date: Mon, 12 Sep 2005 20:55:24 -0000 Sleepymoon posted the following message to readers followed by 128 different versions of You Might Have Narcolepsy IF... Are we really…
Study Title: Phase 2, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study of N91115 to Evaluate Efficacy and Safety in Patients With Cystic Fibrosis Who Are Homozygous for the F508del-CFTR Mutation Treated With…
Todo el mundo le encanta un poco de misterio, excepto cuando se trata de tipos ominosos de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que conecta…
You made it through another week Patient Worthians! This week, we have a pretty intriguing post on acromegaly's relationship with ED. ED is absolutely no laughing matter, but this post is both informative…
Guys, I am so pumped to be from Virginia right now. Having gone to the University of Virginia, I definitely have state pride, but the latest legislation passed in my…
En 2013 Nisa despertó en el suelo necesitan puntos de sutura en la cabeza. Ella no tenía ningún recuerdo de caer. Mirando hacia atrás, ese fue el comienzo de su…
Welcome to the third of many posts related to Patient Worthy’s Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has been diagnosed…
Mi nombre es Lisa y yo vivo con la artritis reumatoide (AR) y la fibromialgia. #myinvisiblefight está en curso, pero tengo fe, la familia y los amigos. Esta es mi…
Esta introducción a la semana de concienciación sobre las enfermedades invisibles, o como nosotros le llamamos #IIWK15 por sus siglas en inglés (Invisible Illness Week) fue escrita para una publicación…
I realize that as a woman who has been unmarried and dating for her entire adult life, my vocabulary is vastly different from that of someone who has been married…
Este es mi hijo Oakley, un niño de cinco años de edad con una sonrisa adorable, que ama a las Tortugas Ninja, y usted nunca adivinar lo que hemos pasado.…
Happy almost-Valentine's Day Patient Worthians! What are your plans for this weekend? It's a special holiday-- Valentine's Day, designed for romance! But let's face it, chronic disease isn't always sexy, so maybe…
Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill. We are thrilled…
Welcome to the second of many posts related to Patient Worthy’s Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has been diagnosed with…
Conoce a Melissa, una esposa, madre y abogada. Patient Worthy entrevistó a Melissa sobre su #InvisibleIllness - gastroparesia. Hace casi dos años, no-bienvenida y sin previo aviso, la gastroparesia entró…
It's the 'Lil Things.. So we're entering February. I had vowed to a "New Year...New Me." I wanted to find a sense of self worth, find my happiness, and seek…
Soy María; Soy una esposa y madre, fashionista y un entusiasta de zapato. No todos mis días son malos, pero nadie sabe acerca de los días realmente malos porque me…
"Es chistoso. El día que más temía, el día en que te diste cuenta que no ibas a subir el Monte Everest ha ido y venido, y que no se…
Here at Patient Worthy, we can't stress enough how important it is for patients to advocate for themselves. With rare disease, you often have to fight for a diagnosis. But…
Part 3: The Christmas Baby Click here if you missed Part 2 The attention and help that I received from my team of doctors after this moment became applaudable. They…
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