Montréal, Québec – June 3rd 2026 , Ataxia Canada welcomes the recent re-evaluation by the Institut national d’excellence en santé et en services sociaux (INESSS), which recognizes the therapeutic value of SKYCLARYS™ (omaveloxolone) for individuals living with Friedreich ataxia (FA).

This recognition represents an important and encouraging step forward for patients and caregivers across Quebec, as it opens the door to future opportunities for public reimbursement of the first approved treatment for this rare and progressive disease in Canada.

Friedreich ataxia is a rare, neurodegenerative condition that progressively affects coordination, mobility, speech, and heart function. For decades, individuals living with FA have had no disease-modifying treatment options, relying solely on supportive care.

While the INESSS decision includes the mention “Refus d’inscription – Ensemble des aspects”, which may be confusing at first glance, Ataxia Canada emphasizes that the acknowledgement of therapeutic value is a significant development. This distinction reflects the complex nature of health technology assessments, where clinical benefit may be recognized even if broader criteria—such as economic or system considerations—are not yet met for reimbursement.

“For our community, the recognition of the therapeutic value of SKYCLARYS is a meaningful and hopeful milestone,” said François‑Olivier Théberge, General Manager of Ataxia Canada. “Although the decision may

 appear contradictory, it is important to understand that this recognition lays the groundwork for future discussions on public coverage. For patients and families facing this relentlessly progressive disease, every step toward access matters.”

Ataxia Canada also highlights that Quebec has a comparatively higher number of individuals affected by Friedreich ataxia, making progress toward access to treatment particularly important for the province.

This development builds on broader national momentum, following positive recommendations from Canada’s Drug Agency (CDA‑AMC), and reinforces the need for continued collaboration between governments, clinicians, and the patient community to ensure equitable and timely access to treatment.

Ataxia Canada remains committed to advocating for individuals living with ataxia and working with all stakeholders to advance access to effective therapies. The organisation will continue to engage constructively with INESSS and public decision-makers to support the next steps toward reimbursement.