Learn | Share | Find Community

We are a global community for those wanting to learn more about SPTBN1.
Led by a group of parents, doctors and researchers,
we have seen first hand the impact of hard work and dedication looks like.
We look forward to supporting all of those impacted
by SPTBN1 and its subsequent varients.

We welcome you to the Beta Spectrin Foundation.

Newly Diagnosed?

Wondering what to do next? We are here to help.

Click below to learn more about SPTBN1, meet other families and educate your community.