While there is still a lot left to learn about COVID-19, there are a number of facts that we know, one of which is that children face less severe cases.…
This is a great story about people coming together for a young boy with a rare disease, reported by a local tv news affiliate. Members of the Rhode Island State…
Six weeks ago, Gretchen and Josh of Oklahoma rushed their precious 5-month-old Opal to the hospital after she became extremely sick from a cold. It didn't take doctors too long…
The Super Bowl is obviously a big deal for football fans - but it's also (for a lack of a better term) the SUPER BOWL of commercials. Over 100 million…
February 2nd is Neuroblastoma Awareness Day! It's important to know more about this rare cancer, since knowledge and familiarity are often the engines of progress. What is Neuroblastoma? Neuroblastoma is a…
What started as a peculiar and insatiable thirst for water led to a rare disease diagnosis for a Denver family. Although they weren't expecting this challenge, they're ready for the…
Cedar Rapids, Iowa is rallying to help a one-year-old girl who has been diagnosed with Caravan disease, a devastating disorder that often leads to premature death, within mid-childhood. What is Canavan…
It feels good to rally together for a good cause, doesn't it? That must be the case for this Cedar Valley, Iowa community who answered the call when the mother…
Who's in the mood to help grant a young girl her Christmas wish this year?! People who know 10-year-old Paola Vega describe her as a cute, spunky princess who can't…
We wrote back in 2015 about Beyond the Diagnosis, a traveling art exhibit featuring portraits of children with rare diseases curated by the Rare Disease United Foundation. Its latest stop was…
Last month, we reported about a sudden outbreak of acute flaccid myelitis (AFM) in 2018, a rare condition that has Polio-like symptoms, and affects mostly children. Sometimes, stories like this…
Let's get moving in May! First off, for all you pop culture/Internet meme lovers, it's that time of year... May means we're on the eve of summertime, knee-deep in springtime,…
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…
La enfermedad crónica puede ser difícil de explicar a su hijo. La rareza y la persistencia de la condición, así como las limitaciones que se les imponen, pueden ser difíciles…
One of the (many) things that makes cystic fibrosis so difficult to treat is that there are many mutations of the disease, some affecting very, very tiny subsets of the…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
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.
- OR -
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.
