When you have a rare disease such as Fabry disease, it’s easy to feel alone. As reported on the National Fabry Disease Foundation’s website, no one really knows how many…
When you were a kid and planning your future, what events did you imagine? Your first car? Your prom? Your graduation? Your wedding? For this boy with Duchenne muscular dystrophy, he…
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…
Gaucher disease occurs when the body doesn't produce the enzyme beta-glucocerebrosidase, which is needed to break down fats, or lipids. As a result, fatty deposits collect in the spleen and liver,…
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…
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…
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…
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…
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…
Have you ever tried to convince legislators–especially your state’s Senator to support a cause–such as dystonia–that speaks to your heart? If so, you’ll know that it’s difficult because you need…
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…
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…
It seems like every day I read about another death caused by opioid addiction. When the US government attempted to stem the tide of opioid abuse by restricting medical professionals' ability…
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…
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…
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