Alex Fielding, Rare Disease Patient, Chemical Engineer & Business Leader

Alex was diagnosed in 2014 with Friedreich’s Ataxia, a debilitating, life-shortening dege nerativeneuro-muscular genetic disorder affecting 1 in 50,000 Americans.

Sabina Kineen, Rare Disease Patient, Caregiver & Advocate

Sabina is a self-employed Patient Advocate since 2016. She is passionate about sharing her unique perspective and journey living as a patient and caregiver living with the diagnosis of an inherited, rare disease. By educating others on her own life experiences, including those in clinical trials, she has sought to actively support both patients and industry professionals in order to build bridges and encourage health equity and patient engagement.