Rare Dads: Silent And Strong
Fathers are the rock you can count on, always. Here's a poem to all you rare dads who are a dad and then some! Know that you are loved and…
Fathers are the rock you can count on, always. Here's a poem to all you rare dads who are a dad and then some! Know that you are loved and…
Happy Almost-Father's Day Patient Worthians! This week, we have some important information on the rare disease myasthenia gravis in the spirit of June being it's awareness month. Also, have you ever…
There's good news for people living with carnitine palmitoyltransferase (CPT) deficiency and their caregivers! Ultragenyx recently released data from an open-label study of the treatment triheptanoin. In the study, five infants…
Walking is a popular thing for people to do nowadays when they want to show their support and help raise money for something that is close to their hearts. If…
In the rare disease world, nothing causes rippling waves of excitement quite like a new drug announcement. So prepare for a tsunami, because that’s exactly what you’re getting… sort of. Spring…
Quick question: What does multiple myeloma have to do with myasthenia gravis (MG)? On the surface, not much—one is a rare cancer of the blood, the other is an autoimmune…
As featured in this Strawfie Challenge press release last week, two Ohio twins Aleeya and Alani are seeking to spread awareness of cystic fibrosis and the harsh realities of living…
En un momento dado, la medalla de oro ganando Singapur nadador Clemente Lim estaba postrada en cama durante dos días porque tiene espondilitis anquilosante, "Me daba miedo nunca nadar de…