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 her 23rd birthday, Sara Lefebvre almost died. After having some drinks with friends, her friend drove Sara home. But Sara didn't make it inside; she collapsed in sub-zero temperatures,…
Last year, 92.7 WOBM reporter Vin Ebenau sat down with Allie and Jonna Crocker, two sisters who live around the Jersey Shore, to discuss their experience with rare diseases. The…
Charlie Fry is a three-year-old from Kansas City living with SLC6A1. His family is very active in the SLC6A1 community, even starting a nonprofit titled "A Cure for Charlie." They…
Tara Johnston, a resident of London, England is now twenty years old but still coping with severe acne. Tara interviewed with MyLondon in an effort to raise awareness and share…
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…
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…
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…
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…
A team of German Scientists is offering hope for people who have sports, traffic, or war-related injuries of the spinal cord. According to a recent article in Neuroscience News, these…
Patient Worthy is excited to announce that this Saturday a solidarity concert will be held in Noáin in favor of Dravet syndrome. United by the Dravet through Ranchera Music…
VeDA Vestibular Disorders Association (VeDA) is a nonprofit organization that was founded in 1985. Its goal is to raise awareness of vestibular conditions, improve early diagnosis, and advocate for more efficacious…
On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state…
Over the past decade, scientists have made many life-saving advances in all areas of medicine. They have created molecular agents to target neurodegenerative diseases. But they were stopped right there…
Researchers at Johns Hopkins School of Medicine noted that osteonecrosis (ON) is one of the more serious complications of systemic lupus erythematosus (SLE). According to a recent article in…
Diagnosing Rare Diseases Diagnosing rare diseases is historically difficult. Physicians are taught to think about horses instead of zebras because horses are abundantly more common. For instance, if you're tired…
Veer Basal, age 14, first started showing signs of Friedreich's ataxia when he was around ten years old. The first sign that something was wrong was when Veer began to…
Kohl's has brought a new clothing line whose target audience is rare disease patients. The new clothing includes adaptive options to allow easy access to medical ports and easy dressing.…
According to a recent article in Statnews, providers must obtain prior authorization from an insurer for several reasons; to start, the insurer often requires physicians to justify prescribing a…
As reported in MSN, Duane Zingale explained that one aspect of being born with Treacher Collins syndrome is that you’re extremely memorable. Duane was born without ears or cheekbones. He…
Note: This press release was republished with permission from the EveryLife Foundation for Rare Diseases. The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases,…
CBC News recently interviewed Amanda, Bradley, and Brad Bright, a close-knit black family living in Nova Scotia. The Brights explain that working their way through initial diagnosis and treatment…
Parents of children who have received a diagnosis of Hutchinson-Gilford progeria syndrome (HGPS) may be relieved to learn the FDA recently approved Zokinvy capsules that were developed to lower…
According to EMJ, findings from an analysis spanning 20 years has found that weight loss surgery used to address obesity also significantly lowers a person's risk of developing pancreatic cancer.…
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