Porphyria is a rare blood disease, with less than 20,000 cases in the U.S. every year. Because of this rarity, many people are unaware that the symptoms they experience have…
People often expect that genetic disorders require prescribed, expensive drugs and treatments, but an article by Medical Xpress goes against this idea. Researchers at the Feinstein Institute for Medical Research…
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Researchers have learned that the majority of diseases have a genetic component. It is because of this fact that health professionals are stressing the importance of genetic testing and knowing…
Happy Thursday, Friends! It's getting cold outside! This week we're highlighting a new patient story from the Czech Republic on a younger patient diagnosed with a disease generally associated with…
The Bio Patient and Health Advocacy Summit of 2019 was recently held in Washington D.C. One of the panels addressed patient engagement with the FDA and how patients, advocates, families, and organizations…
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…
According to a story from BioPortfolio, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its medicine Epidyolex has earned recommendation from the UK National Institute for Health and Care…
According to a story from metro.co.uk, Harley Bond was three years old when he was first diagnosed with Sanfilippo syndrome type B, a rare progressive genetic disorder. Now five years…
According to a story from the Malvern Daily Record, the biotechnology company Exelixis, Inc. has recently announced that its partner company Ipsen BioPharmaceuticals Canada Inc. has had its drug cabozantinib…
It started with fatigue. Then came problems with moving, hand tremors and problems walking. Multiple sclerosis was ruled out by magnetic resonance imaging (MRI). But the trouble didn’t go away.…
Nobody expects a shocking diagnosis for their significant other right before one of the most important days of their lives. Ariona Kryeziu's life was altered significantly when her fiancee, 20-year-old…
The majority of the drama that Kim Kardashian faces is unrelatable to many of the people who keep up with her life at home. They do not deal with extravagant…
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…
According to an article from The Plymouth Herald, Miriam, a 9-year-old from Yelverton, U.K., has been nominated for CBBC's Big Heart Award for the care she has provided to her…
Geisinger was founded by Abigail Geisinger over 100 years ago. It now has 13 hospitals and 2 research centers. They just released a new study examining the severity of symptoms…
According to a story from The Times of Israel, Jenni Kleinman Berebitsky died the past August at age 43 due to complications of amyotrophic lateral sclerosis (ALS). The woman was…
In an article from the Orphanet Journal of Rare Diseases, a recent study provides an overview of the treatment of familial Mediterranean fever (FMF) that does not respond to the standard…
According to a story from Eye for Film, Mindy Bledsoe with both direct and star in an upcoming film called The In-Between. This movie will be centered on two friends, Mads and…
According to a story from MedicalXpress, the results from a recent study are linking biochemical changes affecting a protein known as CHIP to a diverse array of clinical characteristics that…
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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 marieclaire.co.uk, Vanessa Potter, a TV producer, suddenly woke up one morning to realize that her eyesight was rapidly failing. That morning, her mind felt fogged…
According to a story from STV News, Aaron Hunter, who is nine years old and was born with the rare condition ROHHAD, recently earned the Good Morning Britain Young Fundraiser…
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