Rare Community Profiles Rare Community Profiles is a new Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their…
The future is now. A small robot called AV1 will allow a sick boy to experience the classroom from home. When you're diagnosed with a rare disease, it's hard to…
Kathryn es una esposa y madre de dos niños increíbles. Ella vive con síndrome de fiebre periódica idiopática indiferenciada, urticaria inducida por el frío y síndrome de taquicardia postural (POTS).…
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…
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,…
Aaron es un graduado de la universidad de veinte-cuatro años de edad que viven en Alabama. Él es un empresario que se especializó en gestión de pequeñas empresas. Su padre…
No hace mucho tiempo, leí un artículo sobre la lucha heroica de un padre para luchar contra la injusticia de su hijo que está viviendo con una enfermedad autoinmune genética…
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…
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…
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…
By now, you may have heard of the website, Pinterest, which came to the public's attention in 2011. Or, you may be one of millions who actively engages with the…
Familial Cold Auto-Inflammatory Syndrome is a very rare condition; set apart even from other hereditary periodic fevers. These unique traits are something that patients with FCAS are all too familiar…
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…
Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS. Patient Worthy got the privilege of hearing,…
Aaron is a twenty-four year old college graduate living in Alabama. He’s an entrepreneur who majored in small business management. His father is a pastor and he has three siblings.…
Not long ago, I read an article about a heroic father’s quest to fight injustice for his son who is living with a rare genetic autoimmune disease called familial cold…
So, let’s say you’ve lived most of your life with a bucket of symptoms you’ve never understood, and that doctors have never been able to diagnose. Symptoms like joint pain,…
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