It’s not often that the “old” people are worried about the “young” people having heart attacks. But, unfortunately, that’s the reality for the Watts family. Their seven-year-old daughter, Avery, has…
Okay, people in the CF Community, listen up! A new targeted treatment for Cystic Fibrosis (CF) may be on the horizon sooner vs. later, and I’m pretty freaking excited about it! This…
If you have narcolepsy, excessive daytime sleepiness, and/or cataplexy, you know how hard it can be to function in "real-world" time. And while treatments have improved, there is still no…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
Doctors don't always know best. That's something every parent whose child has a rare, chronic illness understands. These parents featured on Rare Connect finally got a diagnosis of Muckle-Wells Syndrome…
Dominick “Dom-the-Bomb” Lukowski has always loved baseball. But during his freshman year in high school, he was shocked to notice that he barely had the strength to throw a ball…
Say it with me: "NOH-mid" (or if you prefer, Neonatal-Onset Multisystem Inflammatory Disease...) "NOMID...is a rare disease that is often fatal. This video tells the story of Kayla Martínez, who was…
Okay, all of you dog lovers, listen up! Love ‘em all ya want—shower your own dog, your neighbor’s dog, a random dog in the park—with all the kisses, hugs, and…
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
Cuando eres es un padre preocupado con un hijo enfermo y los médicos no pueden decirle lo que está mal, o darle respuestas que no conducen a soluciones, ¿qué se…
You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…
We are mid-#NERVEmber and gearing up for the Thanksgiving season! As we continue covering chronic illnesses like CRPS/RDS that can greatly effect the nerves, we are also highlighting some helpful tips and stats to…
As reported by the Pain News Network, when someone suffers from chronic pain, chances are he or she might have more than one ongoing disease or condition. This is called…
If you've ever been a caregiver for someone living with a chronic or life-threatening condition, then no doubt you've had to wonder what's waiting around the next corner. That question of "What…
Let’s face it. Every now and then, you run across an article that makes ya wanna go, “Whaaaa?” And this is the perfect example. Apparently, a bunch of research analysts…
Domingo didn’t want to go to yet another doctor. He’d had it. They never believed him when he described his weird and extremely painful swelling episodes. When he was a…
Recently, the Immune Deficiency Foundation (IDF) was invited to try for a grant sponsored by PI CONNECT. The grant would allow the IDF to study the compared effectiveness of antibiotic treatment for…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
Nos ha ocurrido a todos. Es un viernes por la tarde. Estas en el aeropuerto, ansiosamente esperando cerca de la puerta de abordo para el próximo vuelo. Han pasado demasiados…
Think about it: clinical trials are like a huge strip tease. They're waiting to put it all out there, but if no one comes, it’s a huge waste of time…
Los ves por todas partes – A pesar de que se ven totalmente fuera de lugar en el súper mercado o en el cine, o –pero aun- bailando en el…
For many people suffering from rare diseases, gene therapy offers the hope for relief and perhaps a cure for their particular condition. But while many studies are underway, to date, few drugs have…
Earlier this year, the FDA took bold steps, launching them closer to efficient rare disease drug development. And now, the potential improvement for rare disease patients could be huge. Why?…
In recognition of Back to the Future day, the exact date that Marty Mcfly traveled to in 1985, The Micheal J. Fox Foundation and the White House are encouraging speculation…
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