Get involved
There is a part for everyone in curing Blau.
Funding and resources for rare diseases are almost non-existent, so every gift of money, time and voice moves the work forward. We have positions for all levels of commitment and all skill sets.
Ways to help
Pick the way that fits your life.
What the Foundation does
Research is our focus. A cure is our only purpose.
Your support goes to four programs that connect patients, doctors and scientists.
Medical advisory board
Our medical advisory board provides 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 get in touch.
Meet the boardBlau syndrome education
We create educational opportunities through social media, online forums and research symposiums, including our first Blau Syndrome Research Symposium in 2020 and our Educational Forum in 2023, which brought leading experts together with people living with Blau.
Explore educationBlau patient registry
The Blau Syndrome International Registry, built with Coordination of Rare Diseases at Sanford (CoRD), is open. Families can update it whenever a patient's condition changes, giving more accurate and timely reporting on disease outcomes and effective treatments. We need to identify as many patients as possible.
Join the registrySupporting research
Research is our focus, and finding better treatments and a cure is our only purpose. 100% of your donations are dedicated to this goal. We encourage researchers, scientists, physicians, Ph.D. students and anyone with great ideas to contact us.
See research grants
A book by Lexi's brother
Don't Floss Your Toes: Advice From a 5-Year-Old
Lexi's brother, Felix, has written a book, with proceeds donated to the Cure Blau Syndrome Foundation. It is available online.
Thank you
Special thanks to Fidelity Investments Canada for their generous corporate donation. Businesses that want to support Blau research can contact us.
Every dollar, every hour, every voice matters.
Rare disease research only moves when families and supporters push it. Your gift funds research directly, and your story in the registry gives scientists data they cannot get anywhere else.