1. On Thursday, June 1st at 12 pm EST, 11 am central, there will be a seminar by the Amyloidosis Foundation to better understand this complex disease. It will be narrated by two physicians from Boston University, Boston Medical Center, Amyloidosis Center. Register here and mark it on your calendar!
2. Hereditary ATTR Amyloidosis (hATTR): Expanded Access Clinical Trial: Some rare conditions run in families, and some families can trace the history of their disease back to the founding fathers. Hereditary Amyloidosis does not not usually wreak its havoc until after child bearing age, so many families have multiple family members who suffer, although the severity and organs which are most affected varies – even in the same family. The investigational drug Patisiran, now has an expanded access component for those with the hereditary type and polyneuropathy with ten locations in the US. If you have a diagnosis of hATTR, talk to your doctor about whether this study might be for you. You can find out more about the trial here.