Who are you and what is your relationship to OI?

Hello, I’m Cristina Durán, the General Manager of the Angelitos de Cristal IAP Foundation which supports people with OI in Mexico. I’m a business administrator with a master’s degree in administration and social entrepreneurship, and I’m about to finish a specialization. For the past 16 years, I have been collaborating with civil society organizations, specifically in the healthcare sector. In 2021, I joined the organization´s team working for patients with OI.

In what way does OI affect you personally?

Since I was invited to collaborate with the foundation, I became interested in learning more about the condition and how it affects people. Addressing an illness that causes disability is quite a challenge, especially in Mexico, a country with limited access to healthcare and many barriers to overcome. I am excited to work on finding ways to support people with OI and improve their quality of life.

Tell us about the organization you represent!

Angelitos de Cristal I.A.P. Mexican Foundation for the attention of Osteogenesis Imperfecta was founded in 2003. We are celebrating 21 working years. We are the only organization in Mexico that exclusively addresses the condition. The board is formed by 13 persons, including 4 who are relatives of a person with OI, while the other members have different specialties. Over the 21 years, we have supported 603 people with OI. Currently, we have a staff of 8 people, along with 5 volunteers and 4 social service students.

Ongoing projects?

We are currently developing a platform with content about OI. This includes information for children, such as a videos, stories, and educational materials to promote understanding of the condition. Content for caregivers and parents encompasses information about the condition and necessary treatments, such as how to handle a fracture, what to do in emergencies, and how to use a wheelchair, as well as information for schools, among other topics.

Additionally, we continue with our annual program “Watch my Steps” which includes physical rehabilitation program (physiotherapy and hydrotherapy), emotional rehabilitation, donation of medication, telescopic nails, and orthopaedic devices.

What do you do when you’re not doing OI-work?

I’m studying a specialization in Ethics and Society, I enjoy exercising and watching movies or series.

In your opinion – what is the most important task for national OI organizations?

The most important thing is to encourage caregivers and parents of children with OI the importance of following the treatment and being consistent, especially in physical rehabilitation, medication and surgeries with rods. Due to the lack of economic resources, patients do not continue their treatments and in consequence their condition worsens. We focus on addressing patients individually and promoting access to comprehensive treatment that can give them independence. Additionally, we conduct informational campaigns to raise awareness about the condition and promote an early diagnosis.

Do you have any other messages for the readers of OIFE magazine?

Collaboration among organizations is crucial. In Latin America, we need to work more on raising awareness about the disease, promoting early diagnosis, and providing health access for people with OI. Thank you for allowing us to be part of OIFE’s great team. For us, it is essential to share information, support programs, and new research about OI. We look forward to seeing you soon.

This article has first been published in OIFE Magazine 2-2024.