If you want to learn more about cryopyrin-associated periodic syndromes (CAPS), but don't know where to go, have no fear! We have found the perfect place for you! Systemic Autoinflammatory…
Colleen and Sam were shocked when their sweet baby girl, Quinn, was born a few weeks early. She weighed only 3 lbs 6oz and was immediately taken to the neonatal…
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,…
Todo el mundo ama un poco de misterio, excepto cuando se trata de tipos de mal agüero de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que…
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…
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…
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…
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…
Janelle is a 21 year old student at the University of Nebraska at Kearney. She has a great sense of humor, has shown horses for years and someday she wants…
You may not know Oliver Bailey personally, but he is one special boy. The brother of Tilly Bailey, who has one of the rarest genetic conditions in the world Neonatal-Onset Multisystem…
CAPS FCAS, MWS, and NOMID all fall under CAPS with mutations in the same gene and share some overlapping symptoms. However, each has unique distinctions and there can also can…
Everyone loves a little mystery, except when it comes to ominous types of autoimmune diseases. In an article from Rare Connect, a website that connects rare disease patients globally, a…
© Copyright 2024 Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
