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…
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…
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…
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…
'' Mover a la costa oeste ha sido tan divertido; Tenía mi pueblo, mi equipo de vuelta al este. Tuvimos una clara mano corta y tengo la suerte de que…
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…
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…
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…
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…
What do this woman... and this woman... have in common? Well, besides the obvious similarities between their beautiful blonde locks, both of these woman share an unusual connection: familiarity…
If you know the '90's with some clue about pop culture, the start of this headline means something to you. But "FCAS"? Maybe not... At the close of the 90's,…
Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
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,…
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…
Meme Monday has been taken over by some of the most treacherous monsters of Halloween and Hollywood lore. All week we are profiling each monster that has tied us all…
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…
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.…
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…
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.
