5 March 2026
On 5 March 2026, the International Federation for Spina Bifida and Hydrocephalus (IF) hosted the first LATAM SBH Associations Meeting of the year, bringing together representatives from member organisations across Latin America. Participants joined from Guatemala, Argentina, Colombia, Chile, Paraguay, and Ecuador, alongside IF representatives, to exchange updates, share experiences, and explore opportunities for collaboration within the region.
The meeting highlighted the importance of strengthening connections among organisations working to support persons living with spina bifida and hydrocephalus (SBH), while advancing shared priorities such as prevention, health equity, and independent living.
Updates from IF and Regional Initiatives
IF provided an overview of key developments and upcoming initiatives. Participants received a summary of the recent World Folic Acid Awareness Week 2026 webinar, “Partnering for Impact: Advancing Folic Acid Food Fortification in Latin America”, which brought together stakeholders to discuss experiences and strategies for strengthening prevention through food fortification.
Spotlight on Member Organisations
A central part of the meeting focused on presentations from member organisations in Colombia and Chile, highlighting impactful initiatives supporting persons living with SBH.
Fundación Mónica Uribe Por Amor – Colombia
Sonia Uribe, CEO of the Fundación Mónica Uribe Por Amor, presented their comprehensive intervention model aimed at promoting independence and social inclusion for persons living with spina bifida.
The organisation currently supports more than 430 infants and young people and their families, many from low-income households. Their work includes prevention campaigns promoting folic acid awareness, educational initiatives involving youth, and programmes that foster independence through daily life skills and community participation.
One of their flagship initiatives is “Corre por Amor”, a race organised annually in Medellín that gathers 2,000–3,000 runners, including hundreds of persons with disabilities running together on the same track, promoting inclusion and awareness.
Advancing Comprehensive Support in Chile
From Chile, Cecilia Alarcón Guerin, President of the Corporación Espina Bífida – CORPEB, shared updates on their mission to provide comprehensive and free support to persons living with spina bifida and their families.
The organisation has assisted more than 1,400 individuals, delivering over 1,100 medical services and distributing more than 16,000 catheters. Their programmes include healthcare services, rehabilitation, mental health support, and occupational therapy.
CORPEB also highlighted the impact of its folic acid prevention campaigns, which have contributed to a significant reduction in the incidence of spina bifida in Chile.
In the coming months, the organisation will inaugurate its Centre for Comprehensive Rehabilitation, a new space designed to provide integrated services including rehabilitation, research, education, entrepreneurship and work inclusion, with a strong family-centred approach.
Looking Ahead
The meeting also provided an opportunity to introduce the upcoming 31st International Conference on Spina Bifida and Hydrocephalus, which will offer a global platform for knowledge exchange and collaboration across the SBH community.
Participants agreed on the importance of strengthening the LATAM network through regular meetings, social media collaboration, and working groups to share expertise and best practices. Key priorities identified for future cooperation include prevention through folic acid food fortification, independent living initiatives, and improved data collection at the local level.
By fostering dialogue and collaboration, IF and its member organisations continue working together to improve the quality of life and opportunities for persons living with spina bifida and hydrocephalus across Latin America. IF looks forward to continuing these exchanges at the next regional meeting.
