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
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
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
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works
According to a recent article, the sudden death of Cavan woman, Leah Farrelly, shocked her family, friends, and community after living with Long QT syndrome
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Continued From Part One
Mastocytosis refers to an entire group of disorders. All of these conditions are characterized by a rapid production of mast cells (MCs), which are abnormal.
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
Currently, there is no way to determine when a relapse will occur in relapsing and remitting multiple sclerosis (MS), one of the two main forms
Inozyme Pharma has recently announced that the first participant has received a dose of INZ-701 treatment in their investigative Phase 1/2 trial for ENPP1 deficiency.
Raising awareness is extremely important when it comes to rare diseases. After all, rarity typically results in minimal public and medical awareness. That’s why patient
Artist and author Emily Suñez has been living with multiple rare conditions for over a decade, including Ehlers-Danlos syndrome and complex regional pain syndrome (CRPS),
This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. Oscar was born in
A new treatment for Rett syndrome is officially being studied in humans in Canada, meaning Canadian patients may have a new, viable treatment option in
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