New to Blau?
Start here. You are not alone.
We know how overwhelming it can be to face a rare disease diagnosis like Blau syndrome. We are here to help guide you, connect you with resources, and help you take the next steps with confidence. Here are five ways to get on board with the Blau community.
Step 1
Download our physician guide
Many doctors have never seen a case of Blau. Give yours a high-level overview of the essentials, written with leading Blau experts:
- What is Blau syndrome?
- Genetic cause
- Classic clinical triad
- Expanded systemic involvement
- Diagnostic workup
- Treatment overview
- Monitoring recommendations
- Resources and contact information
Step 2
Watch the expert webinar
Start with our introductory webinar featuring leading Blau researchers and clinicians. Learn how Blau syndrome presents, how it progresses, and what current treatment and research options look like.
More forums and recordings are on our education page. Step 3
Explore our website
Take your time browsing through the site to learn about:
Step 4
Join the International Patient Registry
Help drive progress in research by enrolling in the Blau Syndrome International Patient Registry. Your experience matters, and contributing your data can help shape the future of care.
Step 5
Follow us and connect
Stay connected and informed by following us on social media. We share updates, stories, events and resources just for the Blau community.
Private community
Connect with other families in our private Facebook group, Cure Blau Syndrome Foundation Community Group.
We are here when you have questions.
Reach out any time. And when you are ready, a gift to the Foundation funds the research families like yours are waiting on.