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…
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…
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…
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…
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…
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…
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…
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…
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…
Neonatal Onset Multisystem Inflammatory Disease (NOMID) is one of the rarest genetic diseases in the world, but Tilly Bailey, 17, and her family know all about it. Tilly has NOMID,…
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…
During the Holiday Season, we take time every year to express what we are thankful for. Usually this includes, friends, family, food on our tables, and a roof over our…
We've seen great memes from the community, an awesome mom who is trying to raise awareness for CVID through a viral video, and so much more. Check out the highlights…
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…
No, not cinco. "CINCA"! CINCA stands for chronic infantile neurological cutaneous articular syndrome. NOMID stands for Neonatal Onset Multisystem Inflammatory Disease. So is CINCA really the same thing as NOMID?…
Looks like Pfizer wants to buy a Swedish company who provides a treatment for neonatal-onset multisystem inflammatory disease, (NOMID). NOMID belongs to a family of conditions known as Cryopyrin-Associated Periodic…
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