by Madaline Spencer | May 1, 2023
Shawn Connor, father of a girl with Rett syndrome, talks about the advocacy group, Believe in Brynn. As Mr. Connor explains, Believe in Brynn is a patient advocacy group focused on the education of Rett syndrome and funding clinical research. The group hosts...
by Peter Ciszewski | Apr 28, 2023
Akram Khan, MD, FCCP, Associate Professor of Pulmonary, Allergy and Critical Care Medicine at Oregon Health & Science University, discusses the new clinical guidelines on respiratory management of patients with neuromuscular weakness, which was recently...
by James Radke, PhD | Apr 27, 2023
Raphael Schiffmann, MD, of 4D Molecular Therapeutics. Schiffmann, discusses why the US Food and Drug Administration (FDA) put a hold on a phase 1 / 2 clinical trial testing 4D-310, a gene therapy in development that targets the heart in Fabry disease....
by CheckRare Staff | Apr 25, 2023
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by Madaline Spencer | Apr 25, 2023
Shawn Connor, father of a girl with Rett syndrome, talks about his daughter’s diagnostic journey. Rett syndrome is a rare, progressive neurodevelopmental condition that primarily affects girls. These girls appear to develop normally during the first 6 to 18...
