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…
Sarcoidosis is one of the rare diseases that makes me angry. A good friend of mine has it and it has rendered a once vibrant, active woman into one who…
When I think of creativity and crafty talent, Etsy is one of my first fleeting thoughts. I view all the shops on the website, and wonder, “How I wish I…
Al igual que muchos con angioedema hereditario, esta familia no sabía que la enfermedad estaba afectando a varios de sus miembros hasta que uno de los miembros, Ken, fue diagnosticado…
ATTENTION all of you go-getters and Sherlock Holmes peeps! I’m calling on my investigative peeps for some support! Here’s a challenge for ya to help the Cushing’s disease (and Cushing’s…
Everyone wants to know the secret to living longer. The Fountain of Youth. The Elixir of Life. The Philosopher's Stone. Well, researchers may have found the answer and they have…
For me, a good book has the ability to transport me to another place. I often find myself escaping within the pages to another world created by the author. Through…
You may or may not know that Cushing’s disease can be challenging to diagnose because no two cases are exactly the same. People can experience symptoms or even a combination…
Los padres que aman a sus hijos pueden apreciar cuando los tratamientos están disponibles para llevar la esperanza y la curación cuando sus crías están enfermos ... El 17 de…
Here's a riddle to start your day: What do acromegaly, Cushing's disease, and epidermolysis bullosa have in common? If you guessed that they all have treatments owned by a small pharma…
Celia Godfrey is awesome; there's just no debate about it. I wish I had her positive attitude. The seven-year-old lives with dystonia, a neurological condition that affects communication between the…
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