According to a story from BioSpace, the biopharmaceutical company Apellis Pharmaceuticals, Inc., has recently announced the results of its phase 3 clinical trial, which was testing the company's investigational drug…
Gene therapy has become a technological golden snitch: the end of an era for many genetic disorders if we can grasp the treatment’s potential. However, the technology comes with a…
According to a story from News Amed, Rob Burrow gained fame as a star player for the Leeds Rhinos, a professional rugby team. After a distinguished career, Rob retired from…
Hyperphagia is an extreme hunger and obsession with food, and it is a symptom of Prader-Willi syndrome. While many of the other effects of this condition have treatments, this…
January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
According to a story from Medscape, a recent study published in the medical journal Pituitary has revealed a significant disconnect between acromegaly patients and their physicians. The study suggests that doctors…
Olmsted syndrome is a rare disease most frequently caused by mutations in TRPV3. For some patients, it is caused by MBTPS2 mutations. It is characterized by palmoplantar keratoderma (PPK) as…
.png)
The American Journal of Managed Care (AJMC) published excerpts from a presentation by Dr. Andrew Wei at the 61st American Society of Hematology (ASH) Annual Meeting. The article stated…
If you are like me and probably most people, in today’s busy world it is a big challenge to be still and mentally at ease. This is such an important…
A diagnosis is something that is not always easy to attain. Without one, people cannot receive the best treatment for their conditions, miss out on a community of others…
.jpg)
According to a recent article in Pharma Tutor, researchers at NHGRI, a division of the National Institute of Health, identified the biological cause of a newly-discovered autoinflammatory disease they named…
According to a story from Acrofan, the biotechnology company Clover Pharmaceuticals Inc. has recently announced that the first patient has been dosed in its phase 3 clinical study. This study…
January 26th (the last Sunday of January) is World Leprosy Day! Mostly remembered as a Biblical disease that lead to shunning and societal ostracization, the stigma surrounding leprosy has made…
According to a story from Markets Insider, the biopharmaceutical company Principia Biopharma Inc. has recently issued new updates in regards to the timeline of its phase 3 clinical study. This…
By Rachel Whetstone from In The Cloud Copy Shelly Wheaton began a car sign campaign in September to look for a live kidney donor. She was on dialysis because…
One of our partners, the MDS Foundation, Inc, is sponsoring another free MDS Patient & Family/Caregiver Forum. This event will be held in Birmingham, Alabama When: Saturday, February 1, 2020…
.jpg)
According to a recent article in Yahoo News, Johan’s mother’s seven-year-old brother died years ago of chronic granulomatous disease (CGD). The mother, Maren, was told that she also had…
As originally reported in Quest Qunam and Sure Scripts; for manydiseases, time is of the essence in terms of treatment. The patient's health will deteriorate irreversibly thout treatment. However, with…
ALS is a progressive disease that causes the loss of muscle function, and it often develops very quickly after a diagnosis. Rami Epstein, the CEO of the biopharmaceutical company called…
One of our partners, the MDS Foundation, Inc, is sponsoring another free MDS Patient & Family/Caregiver Forum. This event will be held in Houston, Texas When: Saturday, February 22, 2020 Where:…
Hemophilia A is the most common type of hemophilia, accounting for 8 of every 10 cases. Treatment in the past consisted of the administration of concentrated factor VIII through…
.jpg)
Ty Eschenbaum’s world of high school football and working on his family’s ranch and farm changed suddenly after his freshman year when he was diagnosed with leukemia. Ty, who…
The 2019 European Academy of Dermatology and Venereology Congress was held in Madrid, Spain. During this conference, a symposium was held discussing IL-23 inhibition in psoriasis. Here are some of…
In the age of booming media, it can be difficult to know or be confident that you are receiving correct information. When it comes to your healthcare or the care…
Schizophrenia patients in the United States now have a new treatment option. Intra-Cellular Therapies has just announced that their investigative therapy called CAPLYTA has received FDA approval for adult schizophrenia…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
