Multiple government agencies have cooperated to allow MMJ International Holdings to import cannabis extracts to the United States, for use in potential therapies the company is developing for clinical trials in Huntington’s disease and multiple sclerosis. The cannabis plant makes numerous compounds called cannabinoids, two of the…
May is Huntington’s Disease Awareness Month. While I was starting to write this week’s column, my wife, Jill, received some devastating news: Her second cousin, Pamela Averman, had passed away from pneumonia on April 28. Because this is a Huntington’s disease column,…
Because of the COVID-19 pandemic, Huntington’s Disease Awareness Month organizers have come up with creative ways to show support and call attention to the disorder during May. In past years, May has been full of fundraising and educational activities such as outdoor bake sales, group walks and runs, golf…
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…
All of my friends know about my love of wine. The first summer after I turned 21 I was in Maine, and I spent many weekends traveling down to New Hampshire to tour vineyards. I especially love uncorking a strange wine, like PB&J or Choco-Straw…
The first time I met my wife, Jill, she told me she wasn’t comfortable with “PDA.” Being a smart aleck, I asked her why she didn’t like personal digital assistants. (The old PalmPilots were known as PDAs.) She flashed the patient smile of someone who knew it would require…
AskBio announced that it has acquired BrainVectis, a company developing gene therapies for Huntington’s disease and other neurodegenerative conditions. The two companies will work to advance BrainVectis’ gene therapy programs for neurodegenerative diseases associated with problematic fat metabolism in the brain, including a lead candidate therapy for Huntington’s called…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…
FFF Enterprises and Bionews announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone. Recognized as the nation’s leading supplier of…
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