Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…
What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…
Does this word "Musashi-2" mean anything to you? If you suffer from aplastic anemia, it may be the most important phrase you'll ever learn. Scientists are very familiar with Musashi-2 and…
Todos nos dirigimos a YouTube aquí y allá; para una buena risa, un pequeño segmento informativo sobre la nueva palabra añadida al Urban Dictionary, o un clip de Saturday Night…
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
What would you do if Princess Leia suddenly went pale and passed out right in front of your eyes? Well, Crystal Caldwell's mother had that experience years ago while taking…
Little Miss Positive, Georgina Compton, is making the most of her second chance at life. Last year Georgina (George) Compton faced the very real prospect of dying at the age…
Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…
Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…
Finding treatment for a rare disease like CVID can feel like a dice roll. How can you find an effective treatment if doctors don't know exactly what's wrong with you? Dr. Harry…
IIIIIIIIITTSS.... MEEEEMEEEEE MAAAKING TIIIIIIIIIIIIIME! Remember that sneaky little quip I hid not so secretly into a 366 talking tip post a couple of weeks back? well the time has come…
May is Lyme Disease Awareness Month and like other awareness months, it's all about educating the medical community and the community at large. Lyme disease is one of, if not the…
His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…
Each step with dystonia can feel like a marathon. As it turns out, some people in the community mean that literally. Marathons—the 26.2 mile behemoths—have become a worldwide phenomenon. The TCS…
This model with CF took part in photo shoot for awareness campaign while suffering from pneumonia! Professional model Cassie Hawthorne is acting as the face of a social media campaign…
En el otoño de 1991, Kathy dio a luz a un hermoso niño llamado Isaac. Pero Kathy y su esposo sabían que algo no estaba bien. Isaac era su tercer…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
For the Rust family, 2015 was challenging—challenging in ways they never thought imaginable. Why? Because this past year, their eight-year-old son Jourdin began displaying peculiar symptoms—extreme weight loss, in particular—which started…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
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