CureDuchenne Expands Global Duchenne Care Efforts Through First Latin American Symposium in Chile

CureDuchenne recently continued its commitment to improving global standards of care for Duchenne muscular dystrophy by participating in the first Latin American Duchenne Symposium in Santiago, Chile, followed by an additional educational conference in Punta Arenas.

Physical therapist Doug Levine represented CureDuchenne during the multi-day trip, joining physicians, kinesiologists (physical therapists in Chile), occupational therapists, advocacy leaders, and families from across Latin America to share education, strengthen collaboration, and advance Duchenne care throughout the region.

The symposiums highlighted the growing momentum behind Duchenne awareness and care in Chile and across Latin America, while reinforcing the urgent need for expanded access to specialized treatment, education, and future clinical trials.

Advancing Duchenne Education in Santiago, Chile

From March 19–20, approximately 200 healthcare professionals gathered in Santiago for a two-day Duchenne symposium focused on multidisciplinary care. Attendees included physicians, kinesiologists, occupational therapists, and other specialists dedicated to improving outcomes for individuals living with Duchenne.

Sessions covered critical areas of Duchenne care, including:

• Physical therapy and mobility
• Respiratory care
• Cardiac management
• Mental health support
• Family-centered care approaches

CureDuchenne shared educational resources and video content highlighting the organization’s mission to improve and extend the lives of those with Duchenne through research, care, and innovation.

The conference also created valuable opportunities for international collaboration. Advocacy organizations from Mexico, Colombia, Peru, and Chile connected with clinicians and speakers from Chile, Spain, Japan, and the United States to discuss future partnerships, clinical education, and expanding access to care throughout Latin America.

Support for the symposium was provided by Avidity Biosciences, Regenxbio, and Sarepta Therapeutics.

Supporting Families Living with Duchenne

On March 21, the focus shifted from healthcare professionals to families affected by Duchenne. Approximately 100 parents, caregivers, and family members attended a dedicated one-day symposium designed to provide education, support, and practical guidance.

Topics included:

• Physical therapy and stretching
• Respiratory care management
• Mental health and emotional wellness
• Cardiac care
• Family dynamics and caregiving challenges

For many families, the event provided not only educational resources but also a sense of connection and community. Families had the opportunity to meet clinicians, advocacy leaders, and others navigating similar experiences with Duchenne muscular dystrophy.

Expanding Outreach to Southern Chile

Following the Santiago symposiums, Levine traveled to Punta Arenas on March 22 alongside Dr. Francisco Prado, Dr. John Bach, Lucas Villaseca, and other international Duchenne advocates and clinicians.

The group met with physicians from Centro De Rehabilitación Club de Leones Cruz del Sur and participated in a full-day workshop attended by approximately 60 healthcare professionals and family members. The conference continued to emphasize multidisciplinary Duchenne care, including respiratory therapy, physical therapy, mental health, and cardiac management. Attendees also toured the local hospital following the workshop.

Building Momentum for Duchenne Care in Latin America

One of the clearest takeaways from the trip was the growing dedication among Chilean healthcare providers and advocacy leaders to improve Duchenne care throughout the country.

According to Levine, Chile has strong expertise in respiratory care, and many kinesiologists are highly trained in respiratory management for neuromuscular diseases. While general Duchenne-specific physical therapy education still has room to grow, there is strong momentum and commitment among providers eager to expand their knowledge.

Care and awareness in Santiago are steadily improving, though access remains more limited in rural regions. Clinicians throughout Chile expressed a strong desire to bring treatments and clinical trials to the country, which currently has none.

Fundación Duchenne Chile played a major role in organizing the symposiums and continues to strengthen support for local families by helping provide manual wheelchairs and medical equipment for individuals living with Duchenne.

The trip also reinforced the importance of global collaboration. New relationships were formed with advocacy organizations and clinicians across Latin America and internationally, creating opportunities for future education, partnerships, and advancements in Duchenne care.

A Shared Global Mission

CureDuchenne remains committed to ensuring that families affected by Duchenne have access to education, resources, and expert care — regardless of geography.

By supporting international collaboration and sharing best practices in multidisciplinary care, events like the Latin American Duchenne Symposium help strengthen the global Duchenne community and bring hope to families working toward a better future.