I am Jesús Camilo Osorio Barahona, I am a happy husband, being married to Daysi, a woman that supports me and believes in me.  I am the father of two beautiful daughters, Lluvia and Luna (one of which has OI) and I have OI myself.  I’ve been lucky to have my parents, my wife and my family around me and they are my reason to work hard every day.  I am a creative person with a vision to improve the quality of life of the people with OI in Panama.

Tell us a little about the organization you represent!
OI Panama works as an organization for people with OI, providing them with emotional support, guidance, and updated information on the latest scientific advances in relation to OI. Further-more, it serves as an awareness platform in schools and companies to promote inclusion at the national level in education and the work environment.

A poster featuring Luna (daughter of Jesus), in her national costume, who is part of the new campaign of Ayudas Panama. They are the Rare Disease Umbrella of Panama, and the campaign is focusing on inclusion and diversity of different ethnicities, cultures and disabilities.

Are there issues people with OI must struggle with in Panama? Do they get support?
People in rural areas have difficulties finding treatment and therapy for their families and the lack of awareness in schools make their situation very difficult.

But they do get some support from the government and institutions like the National Rehabilitation and Physical Medicine Institute where they can get therapies at low cost and support from a specialist who understands the condition. Also, the Panamanian Social Security Fund provides treatment with bisphosphonates to improve the life quality of the patients.

What do you do when you’re not working for OI Panama?
I am a full-time chess instructor and player.  Chess has changed my life. It has given me the opportunity to test myself and travel to different places with my talent and inspire other people through my Social Networks like TikTok, where I have almost 39,000 followers.

In your opinion, what is the most important task for national OI organizations?
To promote the creation of public policy and create alliances with private entities to create projects for the benefit of our population.

We congratulate the new OI organization in Panama Familias OI Panamá with their successful inauguration meeting on October 21st.

Many people were present and even more followed online. OIFE also contributed with a small video greeting, wishing the new Board good luck with creating a strong OI-community in Panama.

A group photo of 40 people with the logo of FOI Panama repeated 3 times on each side of the photo.