The Fighting HARD Foundation Rare diseases are difficult to face for a myriad of reasons. They can be financially burdensome, physically painful, and emotionally draining. Further, they can make patients…
A drug called Kineret has been approved by the European Commission in 28 European countries for the treatment of both adult-onset and juvenile-onset Still’s disease, reports Check Orphan. Still’s disease…
Every rare disease patient deserves an organization dedicated to working towards their specific condition. These organizations provide invaluable patient advocacy, information, support, and research funding for small communities that need…
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…
Some auto-inflammatory disease symptoms are triggered by colder temperatures. Systemic Auto-inflammatory Disease Support (SAID) has several winter tips for people who suffer from these diseases. Examples of these diseases are…
Cuando veo "Marvel" y una imagen como la siguiente ... ... Veo los ingredientes de un superhéroe! "Un equipo de investigadores en el Trinity College de Dublín ha descubierto lo…
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…
Recently, a friend shared her concern for a colleague whose child is suffering from a rare disease called Muckle Wells Syndrome (MWS), a form of Cryopyrin-associated-periodic-syndrome (CAPS). The story prompted…
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…
Here’s a charming and ultimately optimistic little story about how a mother’s vigilance combined with the right doctors and hospitals can make a real difference in a child’s life—and how…
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…
Síndrome de Muckle-Wells Es raro. Es real. Está listo para causar inflamación excesiva a lo largo de todo el cuerpo con síntomas tales como fiebre, artritis, y malestar general. Esta…
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,…
When I see "Marvel" and a picture like the one below... ...I see the makings of a superhero! "A team of researchers at Trinity College Dublin has unearthed what they…
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…
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…
After a great week of telling the honest stories of people living with invisible illnesses for invisible illness awareness week, we want to focus this Meme Monday on a group…
Muckle-Wells Syndrome (MWS) It's rare. It's real. It's ready to cause undue inflammation throughout one's whole body with symptoms such as fever, arthritis, and malaise. This genetic disease posed a…
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