Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family…
Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
WebMD recently carried a story about a young woman who, after nine years of wheelchair confinement caused by a rare metabolic disease with no name, was able to walk…
Did you know that July 23 is World Castleman Disease Day? Each year, this day is dedicated to bringing awareness to those who are affected by Castleman disease, including patients, family…
An article recently appeared in the AAMC News celebrating the creation of The Children’s National Rare Disease Institute (CNRDI). The article described the long road patients with rare diseases must…
As part of ongoing events surrounding Rare Disease Day, which is officially recognized on the last day of the month of February, Patient Worthy attended sessions of the 8th Annual…
Sometimes it can be difficult to study or learn about rare diseases, especially when there are not many patients. For example, only an estimated 30,000 Americans have Castleman disease. Yet…
According to a story from Yahoo! Finance, EUSA Pharma Limited and BeiGene, Ltd. have recently announced that their Biologics License Application (BLA) has been accepted by the China National Medical…
According to a story from thv11.com, Susan Head of Little Rock, Arkansas is a marine veteran who now faces a new battle: Castleman disease. In the midst of the ongoing…
Cytokine storms have been prominent in the news lately due to their role in COVID-19, but researchers have been studying their connection to Castleman disease for a long time. In…
By Jodee Redmond from In The Cloud Copy At one time, hearing a cystic fibrosis (CF) diagnosis was tantamount to a death sentence for a young person. The median survival…
10-year-old Joey Koslowski doesn't let the small...err, the big stuff get him down. According to MyCentralJersey, the boy is "the youngest child to have the largest mass in the world" caused…
To celebrate Rare Disease Day and raise awareness for approximately seven thousand rare diseases, Dr. Francis Collins, director of the National Institutes of Health, recently interviewed a person he…
David Fajgenbaum was diagnosed with Castleman disease while he was still a medical student. He was perfectly healthy, but in a few days he had organs failing. He was treated…
The 2019 Global Genes Rare Patient Advocacy Summit was filled with incredible presentations that highlighted steps for progress in research and advocacy organization, provided solidarity for the rare community, and…
Patient Worthy has written extensively about Dr. David Fajgenbaum, who has made it his life's mission to find a cure for Castleman Disease. Dr. Fajgenbaum is not only diagnosed with…
According to a story from the Philly Voice, it has been nearly nine years since Dr. David Fajgenbaum was first diagnosed with idiopathic multicentric Castleman disease. This immune system disorder…
According to a story from today.com, Dr. David Fajgenbaum was first diagnosed with Castleman disease in 2010. His first encounter with the illness was terrifying. He was confined to the…
Laura Mayben was living in a time of fear and uncertainty as doctors scrambled to figure out what was wrong with her. With most rare diseases, this time of unknown…
Just a few days after her wedding, when most people are on their honeymoon, Morgan Alamo was told that she may have cancer. Who would have thought that the wedding…
What would you do if you had a disease so rare that you went weeks or months without a diagnosis? What would you do if after your diagnosis, you told…
Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…
It is hard to study rare diseases because there are so few people with them. Patients are scattered all over the world. Many are children. Many cannot travel. How to make…
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…
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…
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