Cure Blau Syndrome Foundation

05/20/2026

📣 Attention Blau community: last day to register for our Blau International Summit is May 31. Join attendees from over 9 countries as they learn about new research, guidelines for treatment, and key diagnostic indicators from speakers around the world.

If you’re a patient, don’t forget to apply for a scholarship. Detailed information, including info on travel accommodations, can all be found on our website.

Questions? Contact [email protected].

05/01/2026

My school schedule looks different so I can stay on track with health problems that escalated when I was around 12 years old. I’m so grateful for my private school that has been an amazing support and helped me avoid home hospital. I’m really social so being with friends is my best medicine!

I’ve been doing infusions since I was 2, and it’s just part of how I need to live my life. It’s funny because I’ve literally grown up with these nurses and doctors.

04/30/2026

Just a day in my life 💙
Prom prep, appointments, and trying to stay on track.

Feeling sick so often definitely took a toll on me, so my parents found a psychologist who specializes in kids with chronic illness.

She helps me set goals and build healthy ways to deal with pain and everything that comes with it, even though…sometimes I just vent the whole time lol.

Also did an interview today sharing my story for our upcoming gala 💙 We’d love to have you there on June 6! Link in bio for tickets.

04/29/2026

04/28/2026

This is what a normal day looks like for me living with Blau.

School, friends, volleyball…�and also medications and shots…

But there’s also something else, research 💙

After struggling with my health for a while, I joined a case study with Ruth Napier testing a medication new to Blau.
�It helped me get back on my feet.
An article was even written about it!

This is why research, education, and funding matter.

Read more at the link in bio and DM with questions.

More tomorrow 💙

04/26/2026

Hi, I’m Keira. I’m 17 and a junior in high school.

Follow along this week to see what life with Blau Syndrome looks like for me, from school and friends to treatments, doctors appointments, and even prom.

It’s all about balancing the good, the hard, and everything in between 💙

04/24/2026

This is what global community looks like 💙

We already have attendees registered from across the United States and around the world, including Ireland, Brazil, Australia, Japan, Mexico, Iraq, India, Denmark, Canada, and Belgium.

The Blau Syndrome International Summit is bringing together patients, families, clinicians, and researchers from across continents, all united by a shared goal, advancing understanding and improving lives.

Whether you are part of the Blau community, a clinician, or a researcher, there is a place for you here.

Join us and be part of something bigger.
☆ July 9–10, 2026
☆ California State University, Fullerton

04/23/2026

We are honored to welcome Naotomo Kambe all the way from Kyoto, Japan as a featured speaker at the Blau Syndrome International Summit.

Dr. Kambe will present:
“Blau Syndrome: A Clinically Recognizable Disease” — offering critical insight into how this rare condition is identified and understood in clinical practice.

As we finalize our speaker lineup, we are bringing together experts from around the world to advance research, deepen understanding, and strengthen our global community.

This is a moment you won’t want to miss.
July 9–10, 2026
📍California State University, Fullerton