Julie Gortze, RN founded what was previously known as Mito New England, in 2013 to allow patients and families find connections and emotional support among those with similar complicated medical problems. She strongly believes in empowering patients with information relevant to their medical issues through educational opportunities, enabling potential for improved quality of lives.
Realizing many rare and complex disorder communities must overcome societal obstacles to obtain proper medical care and resources, Julie has been advocating for the broader rare and complex disorder community.
She has worked as an RN in pediatric home care, sub acute care, and acute care. She has volunteered in several patient advocacy organizations, including MitoAction, United Mitochondrial Disease Foundation and National Organization for Rare Disorders. Julie has been on the planning committee for Rare Disease Day State House events in MA since 2015, volunteers on the Genetics Conference Planning Committee with New England Regional Genetics Group (NERGG), and is on the Steering Committee for the New England Regional Genetics Network (NERGN).. Julie collaborates with Mito Hope and Help, in NY, and has volunteered on their Symposium Planning Committee. Julie was involved in the creation of a rare disease advisory council initiative in CT and has championed a similar bill called An Act to Create an Advisory Council for Rare Diseases MA that is still in play.
Julie has personal experience with a complex disease and has learned first-hand what patients and families must deal with while searching for a cause for symptoms. As a nurse, she also understands that the average medical personnel does not have the familiarity for recognizing, diagnosing and treating a complex medical disorder. She recognizes a need for bridging the gap for patients and families between the busy clinics and available resources to enable more beneficial continuing of care and improved quality of lives.
Julie has four grown children, loves to spend time with her precious dogs, and walk by the ocean - preferably both at the same time.