In late July of this year, biopharmaceutical company, Incyte, announced that the very first treatment in a Phase 3 clinical trial for itacitinib had been administered for an acute graft-versus-host…
Genetic engineering has, for a long time, been a highly heated and contested issue. One must weigh the ethical ramifications and risks of engineering human embryos with the huge potential…
There’s a lot that the marginal zone lymphoma community needs, but there is also a lot being said. Results from clinical trials are coming in, and patient testimonials are shedding…
In late July of this year, the results from a scientific preclinical trial were published in which a research team in Europe discovered initial signs that could pave the way…
The U.S. FDA just granted breakthrough therapy designation to a new mantle cell lymphoma treatment called acalabrutinib! This drug is specifically for people who have already gone through at least…
Psoriasis is often labelled as “disgusting” or “contagious,” causing people who are afflicted by this disease to feel embarrassed and hide their skin from the rest of the world. But…
In 1998, The Mighty first brought the rare disease community into the spotlight, followed by Extraordinary Measures in 2010. Now, seven years later, The Big Sick is doing it again…
A breakout of pimples, a sunburn, and bad dandruff are all skin aliments that we probably faced while growing up, and all probably made us feel lousy, or at the…
In my opinion, Sam Berns is the face of progeria. I first saw his inspirational Ted Talk, “My philosophy for a happy life,” a couple of years ago, but then…
Ostiio, a new Philadelphia-based medical device company, has made it its mission to improve the quality of life for children that suffer from complications of craniofacial defects (in the middle of…
Senator McCain has been a prisoner of war, has had a history of melanoma, and is 80 years old, so last Friday’s routine check-up didn’t end up being so routine.…
Dogs truly are man’s best friend. They share our lives with us, but now unfortunately, they also share our cancers. There have been speculations for a while that there are…
I started seeing George in the beginning of my second year of college. It was a great, no-strings-attached, friends with benefits “relationship” that was fun and carefree. After a couple of…
Parents will do anything for their children, especially Jeremy Cortner, father of son, Casey. According to Journel Sentinel Casey was diagnosed with craniosynostosis at birth, which is a rare condition…
In the span of five years, 3-D printing has taken off. What was once a hopeful idea for the future is now a common amenity in universities, a toy for…
A recent Canadian study published in Seminars in Arthritis and Rheumatism announced findings that psoriatic arthritis disease activity showed trends of stabilizing and even improving during pregnancy. Psoriatic arthritis is…
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…
It is easy to feel alone after being diagnosed with a rare disease. You are surrounded by others that can only empathize so much with what you are going through,…
Photographer Martin Schoeller has partnered with Olympic medalist and renowned author Dara Torres for the Show More of You campaign for psoriatic disease, sponsored by Celegene Corporation and Otezla® tablets.…
For a long time now, I have wondered if a more natural or even metaphysical treatment to the chronic scaly, itchy, red skin I was experiencing from my guttate psoriasis…
As a writer for Patient Worthy, I often focus on successful clinical trials and recent FDA approvals for drugs. Quite frankly, I think that this focus has blinded me to…
Earlier last month, the second clinical trial for progeria was announced as completed. The trial was again funded by The Progeria Research Foundation, spearheaded by Drs. Scott Berns and Leslie…
At the peak of my guttate psoriasis flare up, I had plaques covering my entire body. And when I say entire, I mean entire. My scalp was constantly littered with…
Early this month, Novocure announced that the first patient was enrolled in the RTOG Foundation's Phase 2 pilot trial for recurrent glioblastoma. This trial is aimed to test the safety and…
Have you ever just felt so desperate for something that you jump into a decision, without thinking it through completely or weighing the possible repercussions of your decision? It had…
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