Hyperphagia, or excessive and unrelenting hunger, is a key symptom associated with Bardet-Bield syndrome. This excessive hunger often begins around or before 5 years old and can lead to…
Written by Everett Alms Before I turned 15 years old, my parents had already taken me to see the Grand Canyon, NASA’s Kennedy Space Center, Disney World, Universal Studios, and…
Written by Molly D'Angelo I’m like most parents in that I never want to see my children hurting physically or emotionally. We would do anything to prevent their pain—put a…
Medscape has recently reported on a new supplemental approval from the FDA for setmelanotide, which is a treatment for obesity associated with Bardet-Biedl syndrome (BBS). Now, BBS patients who are…
Long-term extension (LTE) data is now available for setmelanotide, which is a treatment for rare causes of obesity, such as Bardet-Biedl syndrome (BBS) and POMC or LEPR deficiency. Data on…
According to a recent article, a study looked at the symptoms of Bardet-Biedl syndrome that can affect a patient’s sleep patterns. Bardet-Biedl Syndrome Bardet-Biedl syndrome is a rare disorder that…
The 59th Annual European Society for Paediatric Endocrinology (ESPE) Meeting is taking place virtually from September 22-26, 2021. During the Meeting, researchers are discussing best practices and treatments, as well…
Happy Friday! This week, we examine new findings that may reveal why cancer cells are able to resist an attack by immune cells. Also, why is a mother having to…
According to a story from MSN, mother Vanessa Ruiz is facing a terrifying choice: feed her family or pay for the genetic testing to confirm that her children Faith and…
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…
If you hear lithium, what's the first thing you think of? For years, lithium has been one of the most widely used and studied therapies for patients with bipolar…
In a recent press release, biopharmaceutical company Rhythm Pharmaceuticals (“Rhythm”) announced positive data from a Phase 3 clinical trial. During the trial, Rhythm evaluated setmelanotide for patients with Bardet-Biedl syndrome…
Scientists have been studying animals in order to better understand certain diseases for years. In fact, a genetic disorder that causes blindness called Leber's congenital amaurosis was found in…
According to a publication from EurekAlert, a clinical trial of setmelanotide, an experimental anti-obesity drug, is set to begin soon at the Alberta Diabetes Institute (of the University of Alberta).…
According to a story from Genetic Obesity News, the unusual case of a female Bardet-Biedl syndrome patient who also had endometrial cancer is causing researchers to wonder if the two…
The University Hospitals Birmingham in the UK is one of the four centres in the country to run a clinic for patients with Bardet-Biedl syndrome. They’ve recently written an article…
At Patient Worthy, we are dedicated to the covering the latest stories about rare diseases that appear in the news cycle. While this is an important part of our mission…
What do Nathaniel, a child with Bardet-Biedl Syndrome and Sylvester Stallone's famous boxing hero have in common? Keep reading below, or follow the original story to find out! Braille reading…
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