Written by María Barbero, President of OIFE Member OI-Paten/Padrinos-OI

Padrinos-OI is a non-profit organization and supporting member of the OIFE. The charity works with national organizations with the aim of helping individual patients with OI where medical care would otherwise be impossible, mainly in Latin and Central American countries. Maria Barbero has been the president of Padrinos-OI since its foundation in 2006.

OI-Paten/Padrinos-OI is proud to reflect on another year dedicated to improving the lives of children and adolescents with osteogenesis imperfecta (OI), also known as brittle bone disease, in countries with limited or non-existent healthcare infrastructure. In 2023, we maintained our close partnerships with local organizations in Ecuador and Peru while extending direct support to individuals in Nepal and several Central American countries. Thanks to the invaluable generosity of our donors, we raised over 10,000 euros in 2024. These funds were fully allocated to cover life-changing medical treatments for children and young people with OI, ensuring access to critical care that improves their quality of life.

Financial difficulties after the pandemic

While we celebrate these achievements, we are also confronted with mounting challenges that threaten our ability to continue our work at the same scale. The financial difficulties we have faced since the onset of the COVID-19 pandemic in 2020 persist. Our annual income has dropped significantly compared to our peak years, when we were able to raise as much as 24,000 euros. Additionally, the rising cost of treatments, particularly for adolescents and young adults, has placed enormous pressure on the organizations we work with. The amount of medication required increases with the patient’s weight, making treatment for older or larger individuals significantly more expensive. Consequently, some organizations have had to make the heartbreaking decision to focus solely on younger children, leaving teenagers and young adults without the care they need.

The situation is especially difficult in Latin America

The global economic and political crisis have compounded these difficulties. In several Latin American countries, associations that once operated relatively effectively have been forced to shut down due to a lack of financial resources. This financial crisis has left many individuals with OI without access to life-saving treatments. For those affected, this is not merely an inconvenience but a life-altering loss, as consistent treatment is critical for managing the severe physical limitations and pain caused by OI.

We know that the work we do is vital and irreplaceable for those we serve

Despite these setbacks, we remain steadfast in our mission. Our work is carried out exclusively in collaboration with official OI organizations in recipient countries, ensuring transparency and accountability. All treatments adhere to international medical protocols and are supervised by qualified healthcare professionals. In some cases, to reduce costs without compromising care, treatments are administered in patients’ homes instead of in hospital settings.

We know that the work we do is vital and irreplaceable for those we serve. That is why we are calling on the OI community, as well as individuals and organizations worldwide, to join us in supporting this mission. Every contribution, no matter the size, makes a direct impact by providing children and young people with the care they need to live healthier, more fulfilling lives.

OI-Paten/Padrinos-OI is a legally recognized organization in Germany and an associate member of the OIFE. We are authorized to issue official donation receipts that can be used for tax deductions.

We extend our deepest gratitude to everyone who has supported us over the years, and we hope to welcome new allies to ensure that we can continue this vital work in the years to come. Together, we can bring hope and a better life quality to those who need it most.

This article has first been published in OIFE Magazine 1-2025