According to a story from The Whitewater Company, parents Paul & Heather Lynn were at a loss for what to do when their daughter Clarity was born with the rare…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
The last day in the month of February is recognized each year around the world as Rare Disease Day. The day serves primarily as a moment of spreading awareness about…
According to a story from wavy.com, Cherie Reenee Brown was a prominent political organizer and activist in the city of Portsmouth, VA. But on New Years Day 2021 she passed…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Patient groups can optimize patient registries, cross-sectional studies, and/or longitudinal natural history studies to maximize collaborations with sponsors of orphan drugs and gene therapies. Written by Harsha Rajasimha, MS, PhD…
February 15th is recognized annually as International Angelman Day, a day dedicated around the world to spreading awareness among the general public and in the medical field about Angelman syndrome,…
The International Waldenstrom's Macroglobulinemia Foundation (IWMF) recently hosted a webinar presentation on February 9, 2021. This webinar, titled "Why Clinical Trials Matter and How to Find the Right One for…
According to a story from GlobeNewswire, the biopharmaceutical company Soleno Therapeutics, Inc. recently hosted a Key Opinion Leader (KOL) webinar, which was focused primarily on the latest updates to its…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from Pharmacy Times, the US Food and Drug Administration (FDA) has approved a new treatment for large B-cell lymphoma that is relapsed or refractory. Refractory means…
Note: This press release is from the Association for Creatine Deficiencies. To learn more about this organization, click here. For the first time, a newborn baby has been diagnosed with…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
February is recognized as Marfan Syndrome Awareness Month, which is an event intended to help spread awareness about Marfan syndrome among the general public and in the medical field. This…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a press release from Sanofi, platform and poster presentations focused on the company's investigational product candidate avalglucosidase alfa are slated to be made public at the 17th annual…
The month of February is recognized annually as Turner Syndrome Awareness Month, which is intended to help spread awareness about Turner syndrome among the general public and in the medical…
While 2020 was a challenging year for many people in the US, the life of three year old Lelani was in particular disarray. She was in and out of the…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from wndu.com, a fundraiser that was held in Berrien Springs, Michigan, is helping to raise money for Carter Sheline, who recently graduated from high school and…
February 2nd is recognized annually as Neuroblastoma Awareness Day, which is intended to help spread knowledge and visibility about neuroblastoma, a rare cancer that mostly affects children, among the general…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
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