Emily Ventura has never met in-person another person living with progressive familial intrahepatic cholestasis (PFIC), her daughter’s life-threatening ultra-rare genetic disease. That will change on June 21st when Emily and…
According to a story from The Washington Post, Enrique Galvan has been subjected to relentless bullying and rejection ever since he first started school. The reason why? He was diagnosed…
According to a story from findmecure.com, an often overlooked subject for many rare, chronic conditions is the impact that these long term illnesses can have on a patient's sex life.…
According to a story from Medical Xpress, new discoveries are revealing more and more about how the population of bacteria in our digestive system, known as the gut microbiome, can…
Happy Thursday! Today, we're highlighting stories on three patients facing different struggles: a professor, a Jeopardy host, and a man from New Jersey. We also have an article about a…
According to a story from Charcot-Marie-Tooth News, a team of scientists have successfully identified four new mutations that are capable of causing Charcot-Marie-Tooth disease. These mutations affect the GJB1 gene. These new…
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Fifty years ago, the air base in Ho Chi Minh City, formerly Saigon, was the world’s busiest airport. The base is now surrounded by four neighborhoods with about 111,000…
According to a story from globenewswire.com, the biopharmaceutical company Denali Therapeutics, Inc. has recently announced that its experimental product candidate DNL310, which is currently being developed as a treatment for…
On the weekend of June 7th through 9th, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation's Annual Educational Forum in Philadelphia, Pennsylvania on the behalf of…
According to a publication from BioPortfolio, China's National Medical Products Administration (NMPA — similar to the American FDA) recently approved BioMarin's mucopolysaccharidosis type IVA drug Vimizim for use in the…
According to a story from Alabama News Center, a scientist affiliated with Southern Research, Dr. Rita Cowell, has been hard at work researching new potential treatments for amyotrophic lateral sclerosis,…
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