How Ovarian Cancer Snuck Up on This Mom
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
There is a new series on Netflix called “Afflicted.” It chronicles the stories of seven people with chronic rare diseases and their struggle to cope with symptoms as they…
According to a story from Hematology Times, a recent phase 2 study found that a three-part combination treatment could be a valuable treatment option for patients with chronic lymphocytic leukemia.…
TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
Happy Last Day of August! As we get ready for the autumn, we want to highlight four articles. We have an article about the Zebra Ball fundraising for EDS advocacy,…
According to a story from journals.lww.com, a recent study investigates the beneficial impact of a thymectomy operation for patients with myasthenia gravis. This procedure has been a common approach for…
According to a story from BioSpace, the gene therapy company Reflection Biotechnologies Ltd. recently announced that the US Food and Drug Administration (FDA) has given Orphan Drug designation to its…
According to a story from Medpage Today, a recent study found that the drug Avapro, which is commonly used to treat high blood pressure, could also slow down the dilation…
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
According to a story from BioSpace, the biopharmaceutical company AbbVie recently announced that the US Food and Drug Administration (FDA) has approved a new combination treatment for Waldenstrom's macroglobulinemia (WM).…
According to a story from globnewswire.com, the gene therapy company Adverum Biotechnologies recently announced that the US Food and Drug Administration (FDA) has granted them Orphan Drug designation for their…
According to a story from Medical Xpress, a team of scientists from Michigan State University have managed to reveal the manner in which a genetic malfunction can lead to the…
According to a story from BioSpace, the US Food and Drug Administration (FDA) recently approved the drug Oxervate (cenegermin). This treatment is the first FDA approved therapy for the rare…
According to a story from medicalxpress.com, a team of scientists at the University of Massachusetts Medical School have successfully developed a strategy for editing genes that could be used to…
According to a press release from Eisai Inc. and Merck (also known as MSD), Lenvima®(lenvatinib) has been approved by the United States FDA as a first-line treatment for patients…
According to a story from mirror.co.uk, Vanessa Riddle, who had the rare cancer neuroblastoma, recently died after defying her cancer for almost a decade. She passed on June 1st, with…
According to a story from the St. Helens Star, Amanda Sackville-Wiggins was diagnosed with hepatocellular carcinoma, a rare type of liver cancer, just after her 21st birthday. The cancer was…
According to a story from BioPortfolio, the U.S. Food and Drug Administration (FDA) has recently approved a new combination therapy for the treating small lymphocytic lymphoma and chronic lymphocytic leukemia…
According to a story from the San Francisco Chronicle, Isabel Bueso's parents were told when she was born that she would not live more than seven years. However, she continued…
Happy Back 2 School Time! As the week comes to a close, we want to spotlight four articles. We have an honest piece from PW contributors Denise Crompton and Tom…
According to a story from Tablet Magazine, Emily Kramer-Golinkoff is a 33 year old woman who is living with cystic fibrosis, a rare disorder that primarily affects the lungs. Emily…
According to a story from BioSpace, Martin Pharmaceuticals' Livantra appears to be on something of a roll. Earlier in the year, the drug received Orphan Drug designation for the treating…
No one likes to be judged. However, during the many years that I've been involved with rare diseases families, I've learned that some people are very quick to judge parents…
According to a story from Newswise, a team of scientists from the St. Jude's Children's Research Hospital have been hard a work conducting an in-depth analysis of a pediatric solid…