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…
According to a story from ALS News Today, around 5,000 people get diagnosed with amyotrophic lateral sclerosis (ALS) annually. In addition, costs of treatment for patients average $250,000 out of…
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…
The month of May is recognized as National Myositis Awareness Month, a time to spread awareness about myositis among the general public and the medical field. Organized by The Myositis…
From April 22 to April 23, 2022, the CureGRIN Foundation and GRIN Therapeutics conducted their 2022 GRI Virtual Conference, a special online event designed to converge patient families, industry stakeholders,…
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…
On April 28, 2022, the National Organization for Rare Disorders (NORD) and the Rare Disease Diversity Coalition hosted a webinar program titled "Walk in Our Shoes: The Experience of 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…
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…
International Fibrodysplasia Ossificans Progressiva (FOP) Awareness Day is recognized each year on April 23rd. This is a time for spreading awareness about this rare disorder among both the general public…
Eric is 35 years old and has been living with a chronic rare illness for around 20 years: membranous nephropathy. When he was a teen, he noticed that his legs…
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…
Nelson Ambrogio had always looked up to his older brother, Daniel. He has many positive memories of growing up with him. They both shared a passion for soccer, and Nelson…
CureDuchenne is one of Patient Worthy's partner organizations. Patient Worthy partners with a variety of rare disease and patient-oriented non-profits in order to collaborate and help promote one another's activities.…
According to a story from Rolling Stone, iconic comedian Gilbert Gottfried has passed away from complications related to myotonic dystrophy type II, a rare disease. His publicist disclosed his cause…
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…
Since 2015, April 6 has been recognized as Bohring-Opitz Syndrome Awareness Day, a time to spread awareness about this rare disease among the medical field and the general public. The…
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…
On March 29, 2022, the International Waldenström's Macroglobulinemia Foundation (IWMF) hosted a webinar titled "An Overview of Amyloidosis and WM with Dr. Morie Gertz." The goal of this program was…
On March 24, 2022, the Rare Disease Legislative Advocates hosted its monthly webinar to provide updates on legislation and public policy that is relevant to the rare disease patient community.…
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