Sonia Gobeil | Cofounder
Ataxia of Charlevoix-Saguenay Foundation
Sonia Gobeil is a passionate advocate for Ataxia of Charlevoix-Saguenay (ACS), a rare disease. As the Co-founder of the Ataxia of Charlevoix-Saguenay Foundation based in Montreal (Canada), she has dedicated her career to raising awareness and supporting individuals and families affected by this rare genetic disorder. Sonia brings a unique perspective to the field of orphan drug development and rare disease research.
Sonia's work with the foundation has been instrumental in driving research efforts, fostering collaborations with pharmaceutical companies, and advocating for improved access to treatments for ACS patients. Her commitment to making a difference in the lives of those with rare diseases has earned her recognition as a thought leader in the orphan drug community.
At the World Orphan Drug Congress 2025, Sonia will share her insights on patient-centric approaches to drug development, the importance of collaboration between stakeholders, and the challenges and opportunities in the rare disease landscape. Her expertise and dedication make her a valuable asset to any discussion on orphan drugs and rare diseases.
Sonia is also a full-time tax lawyer at an international audit firm.
Appearances:
Day 1- World Orphan Drug Congress USA 2025 @ 15:30
Fireside Chat: ARSACS (Ataxia Charlevoix-Saguenay): Finding solutions for rare disease patients
The rare disease community has seen an increased uptick in collaboration between scientists around the world to find solutions for rare disease patients. The panel for this unique fireside chat will discuss the perspective of a rare disease caregiver who has a daughter with ARSACS and her intensive search to find a treatment or cure. After more than twenty years of seeking a diagnosis, she stumbled upon the work of world renowned neurologist, Dr. Jeremy Schmahmann of Massachusetts General Hospital, and he diagnosed her daughter during a tele-visit in 2020. Subsequently, the two have partnered together with the ARSACS Foundation, based in Montreal Canada, to embark upon various research protocols, fundraising initiatives, and collaborative efforts to rapidly advance science forward for this rare disease.
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