I was alarmed and yet inspired by a recent article I read. Narcolepsy affects nearly 200,000 people in the United States, but sadly goes undiagnosed and undertreated. Don’t let this…
10 Cosas que he aprendido de vivir con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven tenía planes y listas para toda…
Alicia Goss is a college student, and for a long time she didn't know she had a rare condition called Wilson disease. She just wanted to go out and have…
When Megan Howard looked down at her completed drawing, colorful lines intersecting to form odd shapes, she saw elements of “The Scream.” She thought it a fitting depiction of her…
I’ve found that people feel very differently about support groups for their diseases, including narcolepsy. Some seek them out. Others avoid them at all costs. Some might not like the…
One tie, two ties, red tie, blue tie... The list goes on and on for Doug Robins, a young Australian man who’s raising awareness for Duchenne muscular dystrophy (DMD) by…
Lo sé, lo sé. A nadie le gusta examinar un montón de "cosas" de investigación científica, sobre todo cuando es tan complicado de entender. Pero cuando estamos hablando de enfermedades…
Una de las (muchas) cosas que hace que la fibrosis quística (FQ) sea tan difícil de tratar es que hay muchas mutaciones de la enfermedad, algunas afectando a subconjuntos muy…
As the saying goes, “Many hands make light work.” Know what’s even sweeter? When those hands are little—little tiny hands that finger paint, swing on the playground, and play monster…
It’s a scene no one anticipates. The doctor walks into the room where you, and maybe a loved one, are sitting. Clipboard in hand, the doctor pulls up a chair,…
Nikeh Gray has sickle cell anemia and has been in and out of the hospitals for years. Not only is she constantly managing her disease, as the Guardian reports, but…
Sharks have a fascinating immune system (and as far as we know, they don't develop idiopathic pulmonary fibrosis (IPF). They can repair wounds and injuries quickly. Researchers even believe that…
Patient Worthy's very own Angie Randall, a mom, wife and friend with multiple sclerosis is walking to end MS. On Sunday, April 30th, 2017 at 10:45 am, at Soldier Field…
Genetic testing for rare diseases such as spinal muscular atrophy (SMA) before you conceive can be an important step in starting or building a family. It can be vital to…
La Ignorancia: Falta de conocimiento, aprendizaje, o información. Descuidado: No tener preocupación o cuidado, no prestar atención. Al tratar de encontrar las palabras perfectas para describir el reciente accidente de…
Ay Canadá, la gente piensa que eres todo acerca de ser muy educado y su jarabe de arce riquísima, pero yo sé la verdad: Usted sabe cómo luchar y que…
Sólo quedan TRES días más para que las familias, los grupos de defensa de los pacientes y los investigadores den aportes a la nueva iniciativa del NIH sobre la investigación…
Parenting can be very stressful. Whether a stay-at-home parent or a working parent, a single parent or a married parent, mother or father, parent of one child or several children,…
An 8-year-old child in Fresno, California is receiving an FDA approved miracle drug that will possibly lengthen her life. Hayden Calafiore is the first to receive the injection as a…
Wilson’s disease is a genetic disease that may cause copper build up which effects both the brain and liver. Wilson’s disease affects about 1 in 30,000 people in the world.…
Cure SMA is a nonprofit organization that has officially launched their 2017 SMA survey. This is a survey is available to those with spinal muscular atrophy (SMA) across the world. Also,…
A year ago, a WUSA9 News reporter named Nikki Burdine of Dumfries, Virginia shared her personal story with the world. She revealed that she has Tourette’s syndrome. In her news…
¿Qué es todo esto acerca de comer un pedazo de manzana y luego caer en un sueño profundo durante años y años? Eso es lo que le pasó a Blancanieves,…
If you have the desire to learn about Nonalcoholic Steatohepatitis (NASH), you may want to attend the International Workshop on NASH Biomarkers in Washington, DC on May 5th to May…
Want to put your money where your feet are to benefit Tourette syndrome awareness? Well, if you're in Canada on Sunday, March 26th, the West Grey-Ayton Chapter of Tourette Canada will…
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