Another article previously published under "Featured Adult: Rebekah Palmer's Story" in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle in being the adult patient…
According to a story from sectorpublishingintelligence.co.uk, a study from the Fraser Institute suggests that the Canadian government's initiative to more closely control the pricing of drugs could place access to…
The information in this article is sourced from this leaflet from Frambu and this publication from Eurordis. You can also visit Frambu’s website by clicking here. Frambu is a national centre…
As a teacher, It’s not unique to have a kid with a disability in your class. But sometimes it’s hard to know how to adjust your curriculum in order to…
According to a report by wearable-technologies.com, people living with ALS may soon enjoy a new method of communication. A new technology, known as EyeControl, plans to provide a way for…
According to a story from The Rheumatologist, rheumatologists, as specialists in autoimmune disease that can affect multiple body systems, are in a key position to diagnose and treat vasculitis. In…
According to a story from Sunmag, the notorious brain cancer glioblastoma recently claimed the life of a well known figure in public life: Senator John McCain. He was 81 years…
Too often we try to interpret the experiences of others without actually communicating with the very individuals we’re trying to better understand. This leads to false impressions and frequently creates…
According to a story from FiercePharma, the US Food and Drug Administration (FDA) has recently ordered a total of 13 different diabetes drugs to begin carrying warning labels about the…
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…
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