Mitochondrial Disease Mitochondrial disease is a rare and progressive condition that currently does not have a cure. The mitochondria is responsible for providing energy to the body. This energy is used…
A recent study has found that there is an increased risk of developing recurring thrombosis for cancer patients who have a history of venous thromboembolism, or VTE. The results of…
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…
There are thousands of rare diseases, making it difficult to remember, much less understand them all. Patient Worthy is here to help, explaining and raising awareness for rare conditions. Today…
Dr. Andrew Brunner, an oncologist at Massachusetts Cancer Center was recently interviewed by Targeted Oncology. The discussion centered around a phase 1b clinical trial (NCT03066648) investigating sabatolimab together with hypomethylating…
How can researchers diagnose and study disease progression if typical biomarkers are unavailable or inconclusive? This very issue arose during a study on congenital adrenal hyperplasia (CAH). As shared in…
Soleno Therapeutics has announced that they will be hosting a Key Opinion Leader (KOL) webinar on Thursday, February 4 at noon EST. This webinar will focus on Prader-Willi syndrome, specifically…
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…
By Rebekah Palmer The rare disease community has an all too common problem of not using precise language when it comes to addressing the people and the needs of…
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…
Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called…
The UK has recently began the practice of the new UK Rare Disease Framework, a government effort that aims to spread awareness, quicken the diagnostic process, and improve treatment and…
Since Bertrand Might was first diagnosed with NGLY1 deficiency in 2012, medical research around this extremely rare genetic condition has expanded. Unfortunately, Bertrand passed away in October 2020. However, his…
Parkinson's Disease Parkinson's disease is a condition which affects the nervous system. The progressive disease influences movement, and can lead to a wide array of symptoms. These may include- Tremors Stiffness…
Recently, research professors from Michigan Medicine - the University of Michigan shared new commentary around cerebral palsy. Specifically, the commentary focuses on current research, policies, and care associated with adults…
As published in the NIH; the NIH is encouraging people with chronic kidney disease (CKD) to consider following a careful diet. They’re not seeking a summer body though. The rare…
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…
Rebecca Newsome lives with a rare form of cancer called gastrointestinal stromal tumors (GISTs). In this story, she talks about her experiences as a patient in a question-and-answer format. What…
For pediatric patients with Crohn's disease, it can be difficult to predict how the condition may progress, as well as whether or not it will respond well to treatment.…
In 2018, China declared congenital adrenal hyperplasia (CAH) to be a rare disease, and it is estimated to affect 1 in every 6084 Chinese births. However, there are currently…
Toxoplasmosis is transmitted by Toxoplasma gondii, the protozoan parasite which is known to be among the most common parasites worldwide. The infection occurs from contaminated meat, cat feces that…
Illumina has just formed a new partnership with Emedgene. Emedgene is an AI company which works to automatically interpret and collect data for rare genetic diseases. This data will be…
Research grants are fantastic ways to support research in multiple spheres. This is especially important in the sphere of rare diseases and rare conditions, in which research is heavily needed…
One of the biggest concerns associated with the COVID-19 vaccines has been their effect on rare disease patients. There has been minimal research into this topic, leading many to be…
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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