Rare Diseases and Orphan Drugs

Biography

Jeanne is a well-versed patient advocate with a pioneering sense of the web’s potential to improve health care. Through her broad-based experience as a math and computer science teacher and healthcare website developer, she created the first and largest global social media cystic fibrosis patient community in 1996. Jeanne understands the complex issues patients with cystic fibrosis face. She is an expert in creating effective patient-centered website forums, videos, newsletters, and new technologies for patient education and self-care management. She is skilled in preparing and delivering comprehensive presentations to varied audiences including Pharma Conferences. She has recently chaired and/or delivered presentations at Digital Pharma East, Panagora Pharma, the World Orphan Drug Summit and eye for pharma. Jeanne won the Patient Centricity Award in 2011 from Pharma Phorum. She has a teacher’s patience and curiosity and quickly identifies and addresses the needs of patients requiring innovative technological solutions. In the patient insights space, she is detail-oriented with proven effectiveness in stimulating the patient base and is proactive in promoting the implementation of remote technology solutions, reducing cross contamination health risks and ultimately reducing chronic care costs. She is a graduate of Fordham University. Jeanne is a founding member of the Aurora Project. In her spare time, Jeanne (a birder) explores the neighborhoods, parks, and museums of NYC and its surrounding towns with her husband and grandchildren.

Research Interest

Blockchain for patient Identity, Rare Diseases