Blau Summit 2026 · July 9–10, 2026 · Cal State Fullerton
Science and community, in the same room.
On July 9 and 10, 2026, the Foundation hosted the first Blau Syndrome International Summit at California State University, Fullerton. Researchers, clinicians, patients and families from around the world spent two days learning from each other, with one goal: better lives and outcomes for people living with Blau syndrome.
At a glance
Why we gathered
A rare disease needs everyone at one table.
The Blau Syndrome International Summit: Science and Community in Partnership was the Foundation's inaugural summit, a landmark gathering that united world-leading researchers, clinicians, patients and families around one shared goal: improving lives and outcomes for people living with Blau syndrome.
Hosted at California State University, Fullerton, the two days were built to make space for collaboration, research and education, with shared spaces designed to encourage connection between families, clinicians and researchers.
The audience reflected that partnership: scientists, clinicians, patient families, nonprofit leaders and advocates.
The summit met in the Titan Student Union at California State University, Fullerton.
Keynote
From Discovery to Treatment: How Research Is Opening New Doors in Blau Syndrome
Ruth Napier, Ph.D.Associate Professor, Rheumatology Division, University of Colorado Anschutz Medical Campus
Dr. Ruth J. Napier is an Associate Professor in the Rheumatology Division at the University of Colorado Anschutz Medical Campus. Her research focuses on the immune mechanisms driving autoinflammatory disease, with direct relevance to understanding and advancing treatments for Blau syndrome.
As keynote speaker, Dr. Napier set out to show how scientific discovery is translating into new therapeutic possibilities, and why collaboration between researchers, clinicians and the patient community is essential to progress.
The program
Three tracks, running side by side.
The summit ran three concurrent tracks, each designed to meet the needs of its audience, so researchers, families and children could each spend the days on what mattered most to them.
Researchers and clinicians
Scientific Program
Scientific sessions for researchers and clinicians, including oral presentations and posters selected through the call for abstracts.
Patients, parents and caregivers
Patient & Family Program
Programming designed around the needs of people living with Blau syndrome and the families who care for them.
Kids and youth
Children's Program
Organized youth activities for children and young people attending the summit with their families.
Research on site
A half-day natural history study
A dedicated half day gave researchers the unique opportunity to collect data and insights directly from participating patients, with the aim of accelerating our understanding of this rare disease.
Between gatherings, the Blau Syndrome International Registry collects this kind of information year-round from patients anywhere in the world.
Two days, start to finish
- Both daysComplimentary breakfast and lunch for every attendee.
- KeynoteRuth Napier, Ph.D., on how research is opening new doors in Blau syndrome.
- Concurrent tracksScientific, Patient & Family, and Children's programs.
- Natural history studyA half day of data collection with participating patients.
- Thursday eveningA California Backyard BBQ and taco feast for all attendees, with dinner and networking.
- To closeA dinner and evening swim party, a relaxed space for connection and reflection.
Registration was $250, all-inclusive. Every attendee registered, but patients and caregivers were exempt from registration fees.
Scientific program and abstracts
New work, from the lab to lived experience.
The Foundation invited clinicians, researchers and members of the Blau community to submit abstracts that advance understanding of Blau syndrome. Accepted abstracts were featured as posters or oral presentations, with final scheduling set by the Scientific Program Committee.
Submissions were invited across four areas: basic science, clinical research, translational studies, lived experience perspectives. Abstracts were due April 1, 2026. Abstracts were limited to 3,000 characters and structured as Introduction, Objectives, Methods, Results and Conclusion.
From the archive. The summit schedule, youth activities guide and speaker list are available on request.
Email blaufoundation@gmail.comScientific Organizing Committee
Ruth Napier, Ph.D.
Rheumatology Division
University of Colorado Anschutz Medical Campus
Clara Lin, M.D.
Pediatric Rheumatology, Children's Hospital Colorado
University of Colorado Anschutz Medical Campus
Lynn Hassman, M.D., Ph.D.
Ophthalmology, University Hospital of Colorado
University of Colorado Anschutz Medical Campus
Erica Howell, Ph.D.
Executive Director
Cure Blau Syndrome Foundation
Patient and caregiver travel support
No family should miss the room because of the fare.
Families affected by Blau syndrome often face real financial barriers to in-person events. Thanks to generous donors, the Foundation offered a small travel fund for patients and caregivers who could not have attended without it.
Families could request help for one patient and, when needed, one caregiver. Support covered a portion of travel, lodging or registration, reimbursed against detailed receipts, and priority went to families actively taking part: speakers, volunteers and participants in research or community programs.
- $150Travel within CaliforniaUp to $150 toward local travel.
- $500U.S., Canada or MexicoUp to $500 toward travel within North America.
- $750International travelUp to $750 toward travel from further afield.
- $200AccommodationHotel expenses reimbursed up to $200.
- WaivedRegistrationThe registration fee could be waived for approved applicants.
We plan to offer similar support at future gatherings as donations allow. A gift today helps a family be there next time.
Fund family travelThank you
Thank you to our sponsors and partners.
The summit happened because others believed in it. We are grateful to the sponsors who supported a gathering where science and lived experience came together, to California State University, Fullerton for hosting us, and to the volunteer families who gave their time to make two full days run.
Sponsor the next summit
Sponsorship supports a truly collaborative gathering that shapes the future of Blau syndrome research and care. If your organization would like to be part of the next one, we would love to talk.
What's next
Be the first to hear about the next gathering.
Summit news, research updates and ways to help, a few times a year.
Keep the research going between summits.
The summit set aside a half day for a natural history study. The Blau Syndrome International Registry does the same work all year, from anywhere in the world. If you or your child has Blau, enrolling is the most direct way to help researchers.
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.