La vida con una grave enfermedad afecta a más de la salud física; salud mental a menudo sufre, también. Que es una de las razones Anna Barlow tomó nota cuando…
Shelly Mountain has traced her family history and shares how von Willebrand disease (VWD) has impacted six generations very differently since her great-great grandmother's era. Medical treatment was difficult back…
When you get a diagnosis of a rare disease, like Ehler-Danlos Syndrome (EDS), trying to learn about it can be overwhelming. Where do you even start? Do you just start…
If you or someone you love has been diagnosed with cystinosis, chances are you want to do everything you can to learn about it. But the internet can be a…
There is good news for the Castleman disease community: a new drug called SYLVANT (siltuximab) has recently been approved for use by the Food and Drug Administration. If you aren't…
Aplastic anemia is the result of the body's bone marrow not producing enough healthy red cells. This can occur because the bone marrow has been damaged by toxic chemicals, radiation, or…
El martes 15 de septiembre varios miembros del equipo digno de pacientes asistían al Taller Científico Anual de las Enfermedades Raras organizado por la Fundación EveryLife de Enfermedades Raras. El…
We’ve written before about the frankly awful Huntington’s disease. The devastating way it strips a person of their motor functions, cognition, and day-to-day quality of life. Treatments remain relatively scarce…
Have you found a comprehensive resource for living with myasthenia gravis (MG)? This is the website you need. From the first click, the Myasthenia Gravis Foundation of America (MGFA) webpage…
"Fate whispers to the Warrior, 'You are not strong enough to withstand the storm.' The Warrior whispers back, 'I am the storm.'" World Rare Disease Day is observed each year…
DaVita Garfield was a young mother with a great job, a strong faith, and was living a happy life when her health began to fail. She had a number of…
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…
Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…
Popular New Zealand news anchor Toni Street announced to fans she has Churg-Strauss syndrome. Toni didn't want to kick up a fuss about her diagnosis with the autoimmune disease. Her viewership…
Conozca a Brittany! Brittany estaba desanimado después de ir a un restaurante y tener la camarera ignoran por completo de ella cuando la distonía hace que le sea difícil…
En julio, PatientWorthy publicó las principales noticias de ADMA Biologics, nuevo fármaco prometedor Inc.; RI-002, un tratamiento con IGIV especialidad para pacientes que están inmunocomprometidos. datos RI-002 demostraron la capacidad…
Invitado Blogger: Pamela Sloate transmite algo de su ropa sucia neurológica en su entrada en el blog original, Dis * aliviar tu inquietud. Hay un número de palabras desagradables en…
Welcome Back Patient Worthians! Acromegaly patients will be interested to see some new research happening in the name of rare disease. Speaking of research, there is a Castleman's event coming up…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
A friend of mine has a disease that at one time carried the name of a Nazi doctor (it was only changed about 2-3 years ago!). So I suppose “Schnitzler…
“In the pipeline” are words that make the heartstrings of anyone living with a chronic, hard-to-treat disease go twanggggg. It’s Big Pharma lingo for “drugs under development,” and generally signals…
Press release: 12th October 2016 Abigail Brundrett, 16 and Cassidy Vancil, 18 from Charlotte, NC, have choreographed and performed a dance video [to help her lifelong friends]. [It] highlights the struggle faced by people…
Sometimes a video speaks VOLUMES more than mere words. Maybe that’s why Kaleigh McCormick decided to make a video about her life with Ehlers-Danlos syndrome (EDS). Maybe she made the…
El Consejo Nacional de Salud y la Alianza Genética están afirmando la necesidad de una mayor participación de los pacientes y la incorporación de las perspectivas de los pacientes…
As someone who was raised to have good manners, you can bet your bottom dollar that my own children do too. So I was both ashamed and proud of a…
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