We are in the process of establishing an advisory board to provide expert advice guiding our search for effective treatment options and ultimately a cure for Blau syndrome. If you have medical or research expertise to offer please contact us. 

We held our first ever Blau Syndrome Research Symposium in 2020, bringing together leading experts to brainstorm research ideas and to inform and engage people living with and affected by Blau syndrome. 

We are currently in the process of creating a global database of patients with Blau syndrome. Unlike other databases, this registry can be updated by parents and doctors whenever changes in a patient’s condition are observed. This will provide more accurate and timely reporting on disease outcomes and effective treatments. We need to identify as many patients with Blau syndrome as possible. Stay tuned for information on how to register. For now, please register as a member for updates.  

Research is our focus and finding better treatments and a cure is our only purpose. 100% of your donations will be dedicated to this goal. We encourage researchers, scientist, physicians, PhD students, or anyone with great ideas to contact us with an expression of interest.