Amyloidosis Support Groups (ASG), the leading nonprofit volunteer organization providing support nationwide for those impacted by all types of amyloidosis, today announced that over 300 participants have joined the Amyloidosis Patient Registryexternal link, opens in a new tab and it is now available to the entire community. The Registry is a compilation of data on the amyloidosis patient experience and is intended to become the new, go-to resource for medical researchers and caregivers in the pursuit of earlier diagnosis, better treatment and improved quality of life for those affected by this debilitating disease.
"I am just thrilled that we've had this much early participation from our patient community," said Amyloidosis Support Groups (ASG)external link, opens in a new tab Co-Founder and President Muriel Finkelexternal link, opens in a new tab. "When the idea of a patient registry was first brought to me by Dr. Martha Groganexternal link, opens in a new tab at Mayo, I presented the idea to our attendees at the 2015 amyloidosis conference in Chicago, where it was met with unanimous enthusiasm."