When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
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…
Let's face it, it's not a secret that phones and tablets are taking over our lives! Even the littlest among us are showing a shocking attachment to the glowing screens.…
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…
In a post just in time for last year's Sjögren’s Awareness Month, blogger Michelle Traub, who happens to have Sjögren’s herself, offered seven tips she uses to live everyday with a…
Severe Combined Immune Deficiency (SCID), a primary immune deficiency, was once a fatal disease but is now considered a "pediatric emergency," needing immediate diagnosis and treatment. If it's caught right…
Crista Procopio is a self-described type A personality. "I never, ever let anything stop me from getting involved and succeeding," she says. "When I set a goal, I always reach…
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…
This one may not be fresh and recent, but it’s worth another look. It’s kind of an “oldie but goodie,” if you will. And it’s also about damn time someone…
"I AM FEELING LIKE I MAY NOT EVER MAKE A DIFFERENCE." Through the power of the Internet (blogs, videos, message boards, or what have you) those living with rare diseases have the…
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…
Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands. Here's what you need…
When all else fails and you long to be Something better than you are today I know a place where you can get away It's called a dance floor, and…
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…
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