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…
The Castleman Disease Collaborative Network is hosting a gala next month to raise money to continue to research the causes of Castleman Disease and find the cure. Castleman is as…
His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…
The lymphatic system is the body's first line of defense against disease, so when lymphatic cells suddenly begin to multiply and overwhelm the immune system, it might be diagnosed as Castleman…
Never judge a book by it's cover, or a disease by it's name. Familial Mediterranean fever is not a chronic longing or fiery passion for the beaches along the coast of…
Dr. David Fajgenbaum was read his last rites- but he did not die, instead he turned the rare disease research model around. He is now working to expand the model…
When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…
For many doctors, Castleman disease seems impenetrable. Not only is the disease incredibly rare (only affecting maybe 30,000 people in the United States), its innocuous smattering of symptoms are easily…
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