According to a story from Pulmonary Advisor, the rare condition pulmonary arterial hypertension (PAH) is mostly known for the impacts that it can have on the lungs and on the…
This year, Patient Worthy will have the privilege to cover one of the planet's foremost patient centered events on chronic pain: The International Pain Summit, which will be held from…
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About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common…
Note: The author does hold immense compassion for children and teens and their families living with rare disease. Compassion is empathetic in sorrow, rather than wishing there is no sorrow,…
According to a posting from clinicaltrials.gov, an observational study will be focused on the identification of biomarkers for pediatric congenital heart disease and pulmonary arterial hypertension. Biomarkers derived from the…
According to a story from the US Food and Drug Administration (FDA), Dr. Amy Abernethy, who is the current Prinicipal Deputy Commissioner at the agency, was eager to start working…
According to a story from PR Newswire, the clinical-stage company Vyriad, Inc. and the biotechnology company Regeneron Pharmaceuticals, Inc. are partnering in a licensing agreement and research collaboration to investigate…
As originally reported in Medical Xpress, the ’smart shirt’ is a comfortable shirt for daily life that also functions as wearable technology. The shirt is equipped with sensors that track…
According to a story from Medscape, the drug burosumab (marketed as Crysvita) demonstrated its ability to provide long term benefits for nearly two years to patients with the rare disease…
Happy Thursday, Friends! Welcome to November! This week we're highlighting stories two stories from rare patients in the Czech Republic. We also have a story about two girls in South…
Not just anyone can cure their own illness. Understanding how to cure a rare disease is complex, as these illnesses often have unique and poorly understood characteristics. Treatment and diagnosis…
Data in the Modern Age The depth of information available today is unique to our age of technology. Current advances provide a platform to consolidate information on a wide array…
According to a story from Medical Xpress, a team of researchers affiliated with the University of Granada and the research organization CIBERFES have discovered a pair of new mutations linked…
As originally reported in Pinnacle Care, when you are diagnosed with a rare disease, it can seem there is the whole world opening that you must learn all the crevices…
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The concept of N-of-1, or personalization of clinical care, originated in the 1980s according to an article in The Scientist. It began with a sixty-five-year-old Ontario man who was…
According to a story from NBC News, the US Food and Drug Administration (FDA) issued an announcement during the summer detailing a patient death linked to the use of fecal…
Recently, different celebrities have been making their chronic conditions public via social media. Lena Dunham was motivated for a similar reason to Billie Eilish, who revealed she has Tourette syndrome,…
Hogan Teem was a healthy seventeen year old. He had a girlfriend and he spent his summers mowing lawns in his North Carolina hometown. Hogan played football, baseball, and…
According to a story from Medical Xpress, an international team of scientist from 34 different countries are putting their heads together to identify the most effective treatments for ulcerative colitis,…
As originally reported in NBC News, Mitchel Herndon was witty, sporty, and very close with his siblings. At 19, he began to study as a freshman political science and theology…
FA Fanconi anemia (FA) is a rare disease in which the bone marrow in the body essentially fails. It is a genetic condition where the body progressively becomes deficient in…
According to a story from Buzzfeed News, Facebook has been receiving more negative press than ever lately, and so far it often seems justified. From the Cambridge Analytica scandal to…
Boo! We hope everyone's trick or treat bag was heavy on Reese's this year! This week we're highlighting stories about a youth advocate, gene therapy, and a multiple sclerosis predictor.…
If you or someone you know has ADPKD, email us at [email protected]. We’d love to hear from you about your experience! According to a story from Medscape, a subject of…
According to a story from Express Digest, young mom Emily Nixon, age 25, was heartbroken when her oldest daughter Darcy Roger, age 6, passed away only five days after her…
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