Her Near Death Meant New Hope for 6-Year-Old Son
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
Cuando Skyelah nació, su madre Angela inmediatamente notó que algo era diferente. Ella tenía tres otros hijos que arrullaron y sonreían como niños. Skyelah rara vez lo hacía, de…
Los médicos no siempre saben mejor. Eso es algo que cada padre cuyo hijo tiene una, enfermedad crónica rara entiende. Estos padres que aparecen en raras Conectar finalmente tuvieron un…
When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach. There are a lot of variables--that's what makes these conditions so difficult to diagnosis,…
Es una especie de insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión quira a nivel internacional . Y tal vez los médicos…
Es una especie de una insignia de honor cuando una enfermedad rara consigue tiempo de emisión en un programa de televisión a nivel internacional querida. Y tal vez los médicos…
Para cualquier persona que sufre de dolor crónico, ya sabes lo que se siente. Si usted no ha tenido ese lujo, esto es lo que se siente: Uno se siente…
Estoy enfermo como el demonio y no quiero aguantar más! Por favor que alguien me diagnostique ?! Allá en RareConnect, un hombre llamado Blair escribe acerca de sus síntomas: pérdida…
One of the first things every set of parents does when their precious baby is born is start looking for which traits have been handed down. Does she have her…
The only time we actually like the FDA is when they finally approve drugs—especially when they're for rare diseases. Well, in April of 2016, they made a rare group of…
Researchers around the world are constantly looking for new leads in combating chronic illnesses, and they’re making progress all the time. But it’s not often they make a discovery like…
When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…
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…
w an withIt’s kind of a badge of honor when a rare disease gets airtime on an internationally-loved television show. And maybe the doctors at Canada’s McGill University Health Centre…
We all know that an early diagnosis can save lives. But, in an unexpected turn, this mother’s late diagnosis is what saved her son. RareConnect.org details the story of Malinda…
I'm sick as hell and I don't wanna take it anymore! Won't somebody please diagnose me?! Over at RareConnect, a man named Blair writes about his symptoms: hearing loss, hives, joint…
For anyone suffering from chronic pain, you know what it’s like. If you haven’t had that luxury, here’s what it feels like: You feel like Frankenstein. Your friends and family…