Backpack Health and Project Alive Partner to Advance Hunter Syndrome Research
Partnership will provide the scientific community with patient reported data needed to advance treatment and cures
By: Project Alive
"Backpack Health's ability to aggregate patient reported data on the care, treatment and daily living challenges associated with Hunter syndrome will enhance our mission of sharing new insights with the scientific community and informing promising clinical research like gene therapy, gene editing, and other treatments,"
"Patients and caregivers often recognize aspects of rare diseases before clinicians and researchers,"
Backpack Health's health management tool empowers the Hunter syndrome community by allowing them to control their health information. The mobile platform provides
patients with the ability to store personal health records securely on any device with the ability to translate, share and transport all data.
"We are thrilled to further assist patients with Hunter syndrome by partnering with Project Alive and supporting the community's efforts to promote research, assist industry in the space, and enhance awareness about this rare disease to the scientific and medical communities, as well as to the public," said Jim Cavan, Founder and CEO of Backpack Health. "Our focus on patient empowerment via health data makes Backpack Health a natural partner in this initiative, and we are excited to work with Project Alive to make a difference for Hunter syndrome patients and their families."
Caregivers of Hunter syndrome patients can join their loved ones to the group by going to: https://join.backpackhealth.com/