Welcome 👋 Who I am and why BOCommunity exists

Hello,

I am Johann, the creator of BOCommunity, and above all the dad of Gabriel, a one-year-old boy living with post-infectious bronchiolitis obliterans (PIBO).

When we learned the diagnosis, my wife and I were faced with three things:

• the lack of information and of real stories from parents,
• the loneliness,
• the fear.

I promised myself I would build a platform so that the next families facing this disease could find a community. This site is that promise.

BOCommunity is also a place to share contacts of professionals, care and treatments: not everyone knows these rare diseases, and it can be helpful to mention them to your doctors.

Finally, the more of us there are, the stronger we are, and the more weight we have to help research move forward. On that front, I am still discovering how the medical and research world works, but I am learning.

So I am reaching out to you, members of this site: how can I help you? What can we improve together? Reply to this message, or simply introduce yourself: who you are, your connection to the disease, what you are looking for here.

Don't hesitate!

Thank you,

Johann, Gabriel's dad