Congratulations to Accelmed, the equity investors, who backed SoniVie, a startup company based in Israel that's made a breakthrough treatment device for pulmonary arterial hypertension (PAH). Of course, we owe a…
never lose hope, for hope is an infinite feeling and disappointment is never everlasting.
Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…
Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…
10 cosas que he aprendido viviendo con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven yo tenía planes y listas para toda mi…
PatientWorthy está asociando con CysticLife.org para poner de relieve algunos de los miembros en su increíble comunidad! CysticLife.org surgió de un blog iniciado por paciente con FQ, Ronnie Sharpe, para…
In a segment on Oprah, dystonia patient Rogers Hartmann agreed to wear a camera on her head to show how she experiences the world. Bent at nearly a 90% angle, she frequently…
Alguna vez has tenido uno de esos días en los que simplemente no se sentía muy entusiasmado acerca de su vida? Tú sabes de qué estoy hablando. Los blues de…
The following memes focus on keeping your happiness and badassery levels high! No matter what your struggles, whether it be dealing with a rare disease or fighting to create awareness…
no one likes it when you're telling your story or sharing an experience and someone jumps to a conclusion about what you're saying, who you are or what the point…
Every day we wake up, put on our shoes and meander through our daily activities. But for those living with a rare disease, meandering feels more like a daily fight…
From time to time, whenever we are going through a tough time, whether it be at our jobs, in our personal lives or in our relationships, we tend to forget…
With all the hype around Virtual Reality headsets, 3D Printing and all other sorts of awesome and weird tech created to "enhance" our already hyper connected lives, the meme above…
Shelly - Back at it again with the meme game! (if you've been living under a rock, click here to check out a kid made famous for wearing white vans...…
Shelly is a wife and mother of 2 amazing kids. She is also living with rare chronic conditions called Intracranial Hypertension and Primary Lateral Sclerosis among a myriad of…
So for those of you out there living with a rare disease, I am sure that you are very well educated of all the government and non-government organizations that work…
Patient Worthy asistió al foro anual organizada por la Fundación EveryLife este pasado martes en Washington, DC. Fue un taller de día completo acerca de por qué la incorporación de…
He descubierto que a través de todo esto, mi hijo ha empezado a preguntar, '¿Cómo puedo ayudar? ¿Que puedo hacer?' En cierto modo, esas son las mismas cosas que le…
Estimada Jessica, Te miro y veo determinación. Las cosas son tan difíciles para usted ahora, corriendo de un hospital a otro. Yo sé que usted nunca imaginó que su vida…
This week's Meme Monday is rather special. Our chief editor is on the ground live tweeting from NIH during Rare Disease Day 2016 #RDD2016 - her first thoughts: "HERE, YOU…
Aaron es un graduado de la universidad de veinticuatro años de edad que vive en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
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!…
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…
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…
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