In 2025, IPWSO LATAM surveyed PWS associations across Latin America to understand their progress, challenges, and needs. The results show a region full of potential – but still facing significant gaps.
Severe under diagnosis
An estimated 36,000 people live with PWS in LATAM, yet associations know of only 1,511 cases. Around 629 babies with PWS are expected to be born in 2025 mostly in Brazil, Mexico, Colombia, Argentina, and Peru.
Growth Hormone: Only 1% receive treatment
GH access remains extremely limited:
• Fully subsidized only in Colombia and Costa Rica
• Often started late (ages 3–7)
• Commonly stopped in adolescence
This leaves almost all adults untreated.
Challenges for families
• Low awareness among doctors and schools
• Few specialists
• Limited and irregular access to therapies and GH
• No adult care infrastructure
• Associations run by very small volunteer teams
• Fragmented or inactive groups in many countries
Country highlights
• Mexico: Only 3 volunteers run the association; low early diagnosis; uneven GH access.
• Colombia: One of the strongest models, major training initiatives: over 700 people trained in their caregiver program in 2025, with earlier diagnoses and stronger governance.
• Argentina: New foundation focused on adult services; GH now requires legal action for
access.
A clear path forward: Mentorship
A proposed LATAM Mentoring Program would allow strong associations to support emerging ones, improving governance, strategic planning, data collection, professional training, and advocacy across the region.
A growing movement
Momentum is rising: more trainings, more partnerships, and more connected families. With coordinated support, Latin America can significantly improve outcomes for people with PWS.
View the full presentation by Johana Quinn and Liane Motta – IPWSO Trustees for Latin America here.