Julie Gortze, RN

North Attleboro, Massachusetts

Founder, Rare New England
Represented: Patients, Caregivers, and Patient Advocates

Julie Gortze is a registered nurse and Founder of Rare New England, a nonprofit patient advocacy organization focused on improving the lives of those living and working with rare and complex disorders. She is helping to create a rare-disease advisory council initiative that is forming through Connecticut legislation, and she is active on a similar bill in Massachusetts that would allow a group of rare-disease stakeholders to form a council to investigate issues in the rare-disease community and find solutions.

Through Rare New England, Gortze is a member of the Regional Genetics Network Steering Committee, Global Genes Alliance, and North Attleboro Commission on Disability. She is a 2017 Health Resources and Services Administration Regional Genetics Collaborative Advocate Leaders Partnership Program Recipient. She has been on various conference planning committees, including the New England Regional Genetics Group and Mito Hope and Help, and has helped organize Rare Disease Day State House events.

Gortze has personal experience with a complex disease and has learned firsthand the barriers patients and families must overcome while searching for a cause for symptoms. As a nurse, she also understands that most medical personnel do not have the familiarity to recognize, diagnose, and treat complex medical disorders, so they need help and support as well.

Gortze served as a member of the Advisory Panel on Rare Disease from September 2018 to September 2021.