The 1st International Workshop on Myelodysplastic Syndromes was held this year in Miami, FL from June 24-26. This in-person event was a convergence of researchers and clinicians to discuss advances…
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 Yahoo News UK, Dr. Paula Hunt had a CT scan earlier this year with alarming results. The scan appeared to show a large tumor in…
According to a story from klfy.com, 15 year old Mia Braseaux may seem like a normal teenager; she plays sports, goes to school, and socializes with friends. However, Mia was…
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…
Happy Thursday! This week, we have details on the beginnings of a new trial testing CRISPR gene editing for Duchenne muscular dystrophy, how parents can play a critical role in…
September 7 is World Duchenne Day, a day to help spread awareness about Duchenne muscular dystrophy among the general public and in the medical field. In recognition of this day,…
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…
On August 25th, 2022, the American Society of Gene & Cell Therapy held a webinar as part of its Lunch and Learn series, which is intended to help people living…
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 Buzzfeed News, Comedian Sandy Honig, best known for writing and starring in Three Busy Debras, was recently diagnosed with gastroparesis, a rare disease that impacts…
Acknowledgment: This story is sponsored by Catalyst Pharmaceuticals, Inc., and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted, and…
Happy Monday! This week, we have details on a sad story of a toddler passing away from very rare mesenchymal chondrosarcoma, new research about the genetic risk factors of non-alcoholic…
According to a story from Benzinga, the pharmaceutical company Inceptua Group has recently announced that the medicine paclitaxel micellar (marketed as Apealea) is now available in Germany. This medication is…
According to a story from Market Screener, the biotech company UNITY Biotechnology, Inc., has recently announced the release of data from 12 weeks and 18 weeks of its Phase 2…
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 Upstate Medical University, the college's ALS Treatment and Research Center has been a certified center of excellence for research and clinical care that has helped…
According to a story from Kalimpong News, over 300 children with rare diseases in India are still waiting for the release of pledged funds from the Union Health Ministry so…
According to a story from Market Screener, the clinical stage biopharmaceutical company Kringle Pharma, Inc., has recently announced an update on the progress of its phase 2 clinical trial. The…
According to a story from Cancer Network, the treatment landscape for myelofibrosis, a cancer of the bone marrow, still has substantial unmet need. An important component of treatment are JAK…
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 Medical Xpress, a medicine used to treat high blood pressure and enlarged prostate could be a potential therapy for amyotrophic lateral sclerosis (ALS), a rare…
According to a video posted on Targeted Oncology, adverse events are a significant concern for people that are receiving treatment for the chronic form of graft-versus-host disease. In the video,…
As part of its 2022 webinar series, the Rare Disease Cures Accelerator Data and Analytics Platform (RDCA-DAP) hosted a webinar on August 17, 2022 titled "Addressing the Gaps in Clinical…
According to a story from Ankylosing Spondylitis News, Health Canada has recently approved upadacitinib (marketed as Rinvoq) as a treatment for people living with ankylosing spondylitis. The medicine is specifically…
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