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…
Part 2: Intrahepatic Cholestasis of Pregnancy Click here if you missed Part 1. Before I went through all of this I had the very innocent idea that doctors knew what…
2016 has started out pretty rough. Beginning at around noon on January 1st, I had to deal with a very painful pocket of infection just to the left of my…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
Dolor colosal. Hinchazón gigantesca. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla. Bueno,…
Obtener un diagnóstico de cualquier tipo es aterrador. Conseguir un diagnóstico de una rara enfermedad autoinmune, que amenaza la vida que usted nunca ha oído hablar de es aterrador. Pero…
If the recent Powerball taught us anything, it's that humans love to get large sums of money. DUH! You've recognized the conversations. Co-workers standing by the water cooler talking about…
You want to know what the most popular position in bed is? Scroll down below to check out Lisa's most recent blog post to find out. For all of our…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
Depending on the intricacies of our personal health challenges, some of us may be motivated to take actions that others would find unreasonable. For example, I once met a man…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
When Harry Met Chelsea I frequently refer to online dating as “shopping for men.” I have my list of attributes I’d like to find in a mate, and the men…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
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Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.