Por lo tanto, digamos que usted ha vivido la mayor parte de su vida con un cubo de síntomas que nunca he entendido, y que los médicos nunca han sido…
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…
According to a study published in Pediatric Rheumatology, treatment with anakinra early in the neonatal period (birth-28 days) was shown to be effective in treating CINCA (Chronic Infantile Neurological Cutaneous…
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…
Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…
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…
No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…
Parece que Pfizer quiere comprar una compañía sueca que proporciona un tratamiento para la enfermedad inflamatoria multisistémica de inicio neonatal, (NOMI). NOMI pertenece a una familia de enfermedades conocidas como…
I am a Rare Mom! I love that term, because it covers so many different parts of my life. I’m unique, an individual, a working mom, and I’m also a…
Bienvenidos a la primera de muchos articulos relacionados con la Video Serie de Patient Worthy! Tuvimos el placer de entrevistar al contribuyente de PatientWorthy Kathryn Ferguson, una madre y una…
Los tratamientos para enfermedades autoinflamatorias comúnmente requieren un paciente para recibir inyecciones debajo de la piel, lo que puede ser difícil si usted es el padre de un niño pequeño…
Aaron es un graduado de la universidad de veinticuatro años de edad que vive en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
Todo el mundo le encanta un poco de misterio, excepto cuando se trata de tipos ominosos de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que conecta…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…
While some people thrive in cold weather, one Utah woman won't be out on the ski slopes anytime soon. Jaylyn Rogers is actually allergic to the cold and exposing her skin to…
Welcome to the Editor's picks for this week! This week got a little crazy, but that's how we like it. What do you think about medical marijuana? Do you watch MasterChef?…
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
When Ashley Owen was a year and a half old, her family received news that would forever change their lives. As described through her silent but powerful Youtube video, Ashley…
Happy Friday Patient Worthians! We are rounding out our Cystic Fibrosis campaign with CysticLife this week. For the past few weeks, Patient Worthy has been supporting CysticLife's collaboration with the Mayo Clinic for a…
A weakened immune system doesn’t have to stop the fun, that’s for sure. The Immune Deficiency Foundation will hold two Teen Escapes this summer— an awesome weekend away for teens…
Treatments for autoinflammatory diseases commonly require a patient to receive injections under the skin, which can be tricky if you are the parent of a small child (or large husband) who…
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