BOS Meeting Point

Please feel free to meet these amazing families who have created their own personal Facebook/Instagram Pages about raising a BOS child and see how they enjoy their wonderful children!

Annessia’s Army Against Bohring-Opitz Syndrome & Epilepsy

ASALBO – Asociación Almeriense Síndrome Bohring-Opitz an initiative of Amaia’s parents

Captain Jack and his mateys Swashbuckling through Bohring-Opitz

Chasing the Cleavers

Daniela BOS Sindrome (Facebook & Instagram)

Elijah & Isaac’s life journey

Emily Crisp (Bohring Opitz)

Eva Bermejo: Bohring-Opitz Syndrome

For the Love of Lauren Marie Graham ~ Bohring Opitz Syndrome – Alaska

Hurricane Hudson’s Journey – Bohring Opitz Syndrome

İpek’ le ilkler başka güzel

Jannis Löwenherz


Kylee’s Place “Bohring-Opitz Syndrome”

Layla’s Story – Bohring Opitz Syndrome – BOS

Libby’s Journey- Bohring Opitz Syndrome

Lights for Lena: EV’s adventure through Bohring-Opitz

Mia Portuguese Princess – Life with BOS (Facebook & Instagram)

Miss Chloe, The Princess of Everything Pink, and Her Curly Q Adventures

Noah’s BOS Battle

Okketje – Bohring-Opitz Syndrome

Syndrome de Bohring-Opitz France

Talynn’s Journey: Bohring-Opitz Syndrome

Taya’s World Living with Bohring-Opitz Syndrome

Tiny and Fierce: Living with Bohring-Opitz Syndrome

Tommy’s Story – Bohring-Opitz Syndrome

Workin’ for Wyatt

Is this list incomplete? Please feel free to send us your Story about raising a child with Bohring-Opitz Syndrome at Thank you!

Thank you!

If you are the parent or caregiver of a child with BOS, it might be helpful to talk with other parents who have a child with the same condition in our “Bohring-Opitz Support Group”.