Why BOCommunity?

When we learned about our baby's diagnosis at 6 months old, our world stopped.

Like all parents in this situation, we searched. For information, answers, testimonials. Other families going through the same thing. People who understand.

And we found very little.

A few frightening medical articles, complex terms, and above all… an immense feeling of loneliness.

This observation gave birth to BOCommunity.

Bronchiolitis Obliterans is a rare disease that affects our children's lungs. It doesn't make noise in the media, it doesn't benefit from the same visibility as other conditions. Yet, it profoundly changes the lives of families who live with it every day.

You feel like you're the only ones.

You feel alone facing doctors, treatments, and doubts.

You feel lost in a healthcare system that sometimes moves too fast, sometimes too slowly.

BOCommunity was created to offer what we wish we had found from day one:

• A space where you can read testimonials from families around the world.
• A place to find clear and accessible information.
• A place to share your advice, your doctors, your discoveries.
• A space to ask your questions, even the simplest ones.
• A caring community, without judgment, moving forward together.

This site does not replace medical advice in any way. But it exists so that families feel less alone.

Because breaking isolation is already a first step towards hope.

The purpose of BOCommunity

Beyond mutual support, BOCommunity has a deeper goal: advancing knowledge about bronchiolitis obliterans. By gathering in one place the testimonials, the treatments families have tried, and the specialists and hospitals who know this disease, we are gradually building a knowledge base that existed nowhere before.

The disease is too rare for any single country to be enough: the site is translated into 9 languages and every forum post is automatically translated, so that families and caregivers around the world can understand and learn from each other.

Bronchiolitis obliterans has many faces: post-infectious (PIBO) like Gabriel's, but also after a lung or bone marrow transplant, after inhaling toxic substances, or as part of an autoimmune disease. Child or adult, whatever form of the disease affects you: this community is yours too.

Every testimonial and every shared experience, whatever the origin of the disease, moves everyone forward. Together, across all forms of BO, we want to make this community a strength.

BOCommunity is a free, ad-free project supported by the Hope for Gabriel association.

No parent should face this alone.

If you're here, it's perhaps because you too are looking for answers. Welcome. You're in the right place.

Johann, creator of BOCommunity.org and father of Gabriel, who has BOPI.